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Policies and terms of use

Please read this policy carefully to understand how we treat your personal information as well as your choices and rights. If you do not agree with the terms of this policy, you should not access or use the site.

This site is intended for users located in the United States, and is not intended for users in other countries, including the European Union and the European Economic area.

Privacy policy

Last updated February 2023

Immune Deficiency Foundation (also referred to herein as “we,” “us,” and “our”) is committed to protecting the privacy and security of the personal information we collect, use, share, and otherwise process as part of our business. We also believe in transparency, and we are committed to informing you about how we treat the data we collect and process.

This Privacy Policy (the “Policy”) describes our practices regarding your personal information when you visit the websites we operate that link to this Policy (collectively, the "Site").

We may collect the personal information described below

CategoryDescription
Contact informationWhen you visit our Site, register for an event, or contact us, we may receive your name, address, email address, and phone number.
Account informationIf you create an account with us, we collect your Contact Information, the user name and password you create, as well as information you choose to provide about your birthday, PI status, and PI diagnosis.
Communications and inquiriesIf you contact us, in addition to your Contact Information, we will receive any comments, content, questions, or other information that you choose to provide.
Payment informationIf you make a donation on our Site, we (or our third-party payment processor), in addition to your Contact information, will collect your credit card number, security code, and expiration date, as well as any tribute information you choose to provide with your donation.
Cookies and similar technologiesOur Site uses cookies and similar technologies. Please see the “Cookies and Similar Technologies” section of this Policy for more information.
Usage dataWe may automatically collect information from your browser or device, including the date and time of access; information about what pages you visit and how you navigate the Site; and your location, Internet Protocol (IP) address, device identifier, device type, operating system, and browser type.

Cookies and Similar Technologies


What are first and third-party cookies? A “cookie” is a small file created by a web server that can be stored on your device (if you allow) for use either during a particular browsing session (a “session” cookie) or a future browsing session (a “persistent” cookie). “Session” cookies are temporarily stored on your device and remain there until they expire at the end of your browsing session. “Persistent” cookies remain stored on your device until they expire or are deleted by you. Local shared objects (or “flash” cookies) are used to collect and store information about your preferences and navigation to, from, and on a website. First-party cookies are set by the website you are visiting, and they can only be read by that site. Third-party cookies are set by a party other than that website.

What are “similar technologies”? In addition to cookies, there are other data collection technologies, such as Internet tags, web beacons, pixels (clear gifs, pixel tags, and single-pixel gifs), and navigational data collection (log files, server logs, etc.) that can be used to collect data as you navigate through and interact with a website. For example, web beacons are tiny graphics with unique identifiers that are used to understand browsing activity. UTM codes are strings that can appear in a URL when you move from one web page or website to another. The string can represent information about your browsing, such as which advertisement, page, or publisher sent you to the receiving website.

What cookies and similar technologies are in use on the Site? The Site uses cookies and similar technologies to improve Site functionality, to measure and track how you interact with the Site, to perform analytics, to market to you, to track ad-driven activity, and to otherwise tailor our communications with you. For example :

Google Analytics. We use Google Analytics to collect and process statistical data about the number of people using the Site and to better understand how they find and use the Site. The data collected includes data related to your device/browser, your IP address, and on-site activities to measure and report statistics about user interactions. The information stored is reduced to a random identifier. Any data collected is used in accordance with this Policy and Google’s privacy policy. You may learn more about Google Analytics by visiting https://www.google.com/policies/privacy/partners/ and https://support.google.com/analytics/answer/6004245. You can learn more about Google’s restrictions on data use by visiting the Google Privacy Policy. To opt out of Google Analytics, visit https://tools.google.com/dlpage/gaoptout and install the opt-out browser add-on feature. For more details, visit the Google Analytics opt-out browser add-on page.

Google Tag Manager. We use Google Tag Manager, which allows marketed website tags to be managed using an interface. The tool itself (which implements the tags) does not use cookies and does not register identifiable data. The tool causes other tags to be activated which may, for their part, register personal data under certain circumstances. Google Tag Manager does not access this information. Google Tag Manager is subject to the Google Privacy Policy.

Google Marketing (e.g. Google AdWords conversion, Google Dynamic Remarketing, DoubleClick, GA Audiences). We use certain Google marketing technologies to track user activity on the Site and to serve personalized advertisements. Your browser is assigned a pseudonymous ID used to track the ads that have been served to your browser and to identify those on which you’ve clicked. The cookies enable Google and its partners to select and display ads based on your browsing behavior. For more information on how Google uses this information, you can visit https://policies.google.com/technologies/ads,  https://support.google.com/displayvideo/answer/7621162,  and https://support.google.com/google-ads/answer/7548399?hl=en . To block certain ads served by Google, please visit https://support.google.com/ads/answer/2662922 . Google’s Privacy Policy is available at: https://www.google.com/policies/privacy.  

Facebook Technologies. We use Facebook’s technologies (Facebook Custom Audiences and Facebook Connect) to serve relevant advertisements and to track Facebook ad-driven visitor activity on the Site. Facebook Connect also gives you the option to post information about your activities to your profile page to share with others within your network by using a single sign-in service to authenticate your identity. You may learn more about Facebook’s policies and you can also find instructions for opting out of receiving advertisements via that page.

LinkedIn Analytics and LinkedIn Ads. We use LinkedIn’s technologies for analytics and to add tags to our Site to allow for conversion tracking of LinkedIn ad campaigns. These tools allow us to learn about user activity and LinkedIn audiences, to find trends in user engagement, and to analyze trends with those groups. For more information on LinkedIn’s marketing technologies and to view LinkedIn’s Privacy Policy, visit https://www.linkedin.com/legal/privacy-policy.  You can opt out of LinkedIn Ads by visiting https://www.linkedin.com/help/linkedin/answer/62931?trk=microsites-frontend_legal_privacy-policy&lang=en. 

Other third-party technologies. Some third parties may use data collection technologies to collect information about you when you browse the Internet. We do not control these third parties’ technologies or how they may be used. If you have questions about targeted content, you should contact the responsible party directly or consult their privacy policies.

Choices about cookies and similar technologies. Most web browsers are set by default to accept cookies. If you do not wish to receive cookies, you may set your browser to refuse all or some types of cookies or to alert you when cookies are being stored. These settings may affect your enjoyment of the Site’s functionality. Adjusting the cookie settings may not fully delete all of the cookies that have already been created. To delete them, you should review your web browser settings after you have changed your cookie settings. The links below provide additional information about how to disable cookies or manage the cookie settings:

How Do We Use Your Personal Information? 

We may use your personal information for the purposes described below:
•    Operate and improve our operations, services, and the Site
•    Provide you with services, content, and functionality
•    Improve our services and develop new services
•    Honor our terms of service and contracts
•    Manage our relationship with you and your use of the Site
•    Communicate with you and respond to your feedback, requests, questions, or inquiries
•    Register you for our email list and send you periodic messages
•    Engage with you on social media
•    Enable you to share comments, questions, and answers
•    Improve our marketing efforts, including by providing more tailored advertising
•    Promote our services and contact you about other services
•    Administer a contest, promotion, or survey
•    Assess the success of marketing and advertising campaigns
•    Ensure the privacy and security of our Site and services
•    Maintain our databases and back-ups, including records of our communications with you
•    Process payments and donations
•    Detect fraud and prevent loss
•    Support and improve the Site, including evaluations of functionality and features
•    Analyze use of the Site and our services and prepare aggregate traffic information
•    Recognize your device and remember your preferences and interactions
•    Provide you with a more personal and interactive experience on the Site
•    Determine and track user interests, trends, needs, and preferences
•    General operational support, including procurement, financial and fiscal management, risk and compliance management, and reporting
•    Facilitate corporate mergers, acquisitions, reorganizations, dissolutions, or other transactions
•    Obtain and maintain insurance coverage and professional advice
•    Accomplish any other purpose (a) that is related or ancillary to any of the purposes described in this Policy, (b) that is described to you when you provide the information or to which you consent, or (c) for which we have a legal basis under law 
•    Comply with federal, state, or local laws
•    Comply with a civil, governmental, or regulatory inquiry, order, subpoena, summons, or process
•    Cooperate with law enforcement agencies
•    Exercise or defend legal rights or claims
•    Create, use, retain, or disclose de-identified or aggregated data
How Do We Share Your Personal Information? We may share your personal information for the purposes described below:

CategoryDescription
AffiliatesWe may share your information with our subsidiaries and affiliates and with their respective officers, directors, employees, and agents.
Corporate transactionsWe may disclose your information in the event of a merger, divestiture, restructuring, reorganization, dissolution, or other sale or transfer of our organization or some or all of our assets. If we are acquired by or merged with another entity, your information may be transferred to the new owners. 
Legal obligationsWe may disclose information in response to subpoenas, warrants, court orders or other legal process, or to comply with relevant laws. We may also share information in order to establish or exercise our legal rights or claims; to defend against a legal claim; and to investigate, prevent, or take action regarding possible illegal activities, suspected fraud, safety of person or property, or a violation of our contracts or terms.
Services providers and advisorsWe may share information with our service providers and professional advisors (accountants, attorneys, etc.) who need access to information to provide services on our behalf.
Third partiesWe may provide information about you to third parties that offer products and services specifically requested by you. We may also ask if you would like for us to share your information with other third parties, but will only do so if you consent.
De-identified and aggregated dataWe may share with third parties aggregated information and anonymous or de-identified data that does not identify any specific individual, such as groupings of demographic data or user preferences.

We will keep your information for as long as is necessary to fulfill the purposes for which it was collected, to comply with our business requirements and legal obligations, to resolve disputes, to protect our assets, to operate our business, and to enforce our agreements.

We may delete your information if we believe it is incomplete, inaccurate, or that our continued storage of it is contrary to our objectives or legal obligations. When we delete data, it will be removed from our active servers and databases, but it may remain in our archives when it is not practical or possible to delete it.

We may retain and use anonymous, de-identified, or aggregated information for as long as is permitted under applicable law.

We have adopted security measures that are designed to protect the personal information under our control. From time to time, we review our security procedures and consider new technologies and methods.

But, no security system is perfect, and no data transmission is 100% secure. Although we strive to protect personal information, we cannot guarantee or warrant the security of any information transmitted to or from the Site. Your use of the Site is at your own risk. We cannot guarantee that your data will remain secure in all circumstances.

If a data breach compromises your personal information, we will notify you and any applicable regulator when we are required to do so by applicable law.

Please use the “Contact Us” details provided at the end of this Policy to exercise your rights and choices under this Policy. We honor requests when we are required to do so under applicable law.

Email Preferences. We may send you emails about our Site and services. If you do not want to continue receiving emails from us, you may opt out by clicking the “unsubscribe” button at the bottom of our emails or by contacting us at idf@primaryimmune.org. Please provide your name and contact information in your request, and we will respond to your request in accordance with applicable law.

Update Your Information. Our goal is to keep your information accurate, current, and complete. If any of the information you have provided to us changes, please let us know via the “Contact Us” details at the end of this Policy. We are not responsible for any losses arising from any inaccurate, inauthentic, deficient, or incomplete personal data that you provide to us.

Complaints. If you believe your rights relating to your personal information have been violated, please contact us via the “Contact Us” details provided at the end of this Policy.

California. Under California Civil Code § 1798.83, California residents who provide personal information in obtaining products or services for personal, family, or household use may be entitled to request and obtain from us, once each calendar year, information about the information we shared (if any) with other businesses for direct marketing uses. We do not currently share your personal information with third parties for those third parties’ direct marketing purposes. Please be aware that not all information sharing is covered by California’s “Shine the Light” requirements, and only information regarding covered sharing (if any) will be included in our response. As a part of the California Online Privacy Protection Act, all users of our Site may make any changes to their information at any time by contacting us at idf@primaryimmune.org.

Nevada. Nevada residents may submit a verified request to us at idf@primaryimmune.org  to request that we not make any sale (as defined under Nevada law) of any covered information (as defined under Nevada law) that we have collected or will collect about you. Please provide your name and contact information in your request, and we will respond to your request in accordance with Nevada law.

This Policy only applies to the Site. It does not apply to any websites, applications, or services from third parties.

The Site may include links to, or content from, third parties. These links are to external resources and third parties that have their own privacy policies. It may not always be clear which links are to external, third-party resources. If you click on a third-party link, you will be redirected away from the Site. You can check the URL to confirm whether you have left the Site.

We cannot and do not (1) guarantee the privacy or security practices of third parties or any content provided by third parties; (2) control third parties’ collection or use or your information; or (3) endorse any third-party information, products, services, applications, or websites.

Any information provided by you or collected from you by a third party will be governed by that party’s privacy policy and terms of use. You should review their privacy policy and terms of use carefully.

We are a nonprofit organization, and our Site and services are not directed to children under the age of 13, nor is information knowingly collected from children under the age of 13. No one under the age of 13 may access, browse, or use the Site or provide any information to us. If we learn that we have collected or received personal information from a child under the age of 13 without a parent’s or legal guardian’s consent, we will take steps to stop collecting that information and delete it. If you believe we have any received information from a child under the age of 13, please contact us using the “Contact Us” details provided below.

For more information about Children’s Online Privacy Protection Act (COPPA), please visit the Federal Trade Commission's website at: https://www.ftc.gov/enforcement/rules/rulemaking-regulatory-reform-proceedings/childrens-online-privacy-protection-rule. 

We may update this Policy from time to time. If we change this Policy, we will post the revised version on our Site. Any changes, updates, and modifications will be effective immediately upon posting. If we make material changes, we may also notify you through a notice on the Site’s homepage and/or send you an email regarding the updates.

You should read this Policy carefully before using the Site, and you should review it from time to time so that you are aware of its current terms. Your continued use of the Site after the “Last Updated” date will constitute your acceptance of and agreement to any changes and to our collection, use, and sharing of your information according to the then-current Policy. If you do not agree with this Policy, you should not use the Site.

For more information or if you have questions about this Policy, you may contact us by mail: 
 Immune Deficiency Foundation
 7550 Teague Road, Suite 220
 Hanover, MD 21076
        
 or email: idf@primaryimmune.org  

Terms of Use

Last Updated on November 12, 2020.

This Terms of Use agreement ("Agreement") is between you and the Immune Deficiency Foundation (“IDF”, “we”, “us” or “our”) with regard to the Site (defined below). Please read the following terms and conditions carefully. 

By using and accessing the Site, YOU ACKNOWLEDGE THAT YOU HAVE READ THIS AGREEMENT AND THAT YOU ACCEPT, WITHOUT MODIFICATION, THE TERMS AND CONDITIONS THEREOF. If you do not agree to the terms and conditions of this Agreement, or you do not meet any eligibility requirements established by IDF for use of and access to the Site, you may not access, view, obtain goods or services from, or otherwise use the Site. 

You acknowledge that you are 13 years of age or older and if under the age of 18, are using this Web site under the supervision of a parent, legal guardian, or other responsible adult. Children under the age of 13 are not allowed to visit or otherwise use the Site. You agree that you are a patient with primary immunodeficiency (PI) or a parent, partner, caregiver, or family member of a patient. 

You agree to the terms and conditions of the IDF Privacy Policy (“Policy”) hereby incorporated by reference, which details the ways in which we and other parties might use personal information that belongs to you.

Certain services provided through the Site and features of the Site, such as the ability to upload and manipulate videos (collectively, “Partner Services”), are provided by third-party partners of IDF (collectively, “Partners”). You may be required by Partners to agree to terms and conditions, guidelines, rules, and privacy policies provided by Partners (collectively, “Partner Terms”) in addition to this Agreement prior to being able to use and/or access Partner Services. In the event you use or access Partner Services that are subject to Partner Terms, you agree to be bound by such Partner Terms.

The “Site” encompasses the websites primaryimmune.org, scidcompass.org, livingwithcgd.org, plasmahero.org, and other sites owned and controlled by IDF, and all associated IDF web pages, including without limitation all content, materials, information, policies, modifications, updates, enhancements, revisions, new features, and or new web properties of such pages, along with all Site services (including Partner Services) provided through such websites and web pages. The purpose of the Site is to help address the unique needs of the PI community and to enable individuals within this community to connect with their peers and receive relevant information on managing their disease.

You are responsible for regularly reviewing this Agreement. IDF has the right, but not the obligation, to correct any errors or omissions in any portion of the Site. IDF reserves the right, at its sole discretion, to change, modify, add, remove, or terminate any portion of this Agreement, in whole or in part, at any time, without prior notice. All changes to this Agreement are effective immediately upon being posted to the Site. Your continued use of the Site following any changes to this Agreement will mean you accept these changes.

You agree to use the Site only to post, send, and receive messages, information, and materials that are proper and related to the particular Site project database, forum, community, or other Site service you are using. You will not:

  • Post on or transmit to the Site any defamatory, libelous, obscene, bigoted, hateful, racially offensive, vulgar, harassing, inflammatory, pornographic, child pornographic, violent (meaning content that is excessively violent, incites violence, or threatens violence), profane, threatening, unfair, inaccurate, deceptive or unlawful content or any content that could constitute or encourage conduct that would be considered a criminal offense or give rise to civil liability, whether under statute, common law or equitable principles, or otherwise violate any law. 
  • Upload files that contain viruses, corrupted files, or any other similar software or programs that may damage the operation of another's computer or of the Site server. 
  • Advertise solicit or offer to sell or buy any goods or services for any business purpose, including without limitation promoting or encouraging the growth of a third party site, unless the Site service you are using specifically allows such actions. 
  • Conduct or forward surveys, contests, pyramid schemes or chain letters. 
  • Download any file posted by another user of the Site that you know, or reasonably should know, cannot be legally distributed in such manner. 
  • Falsify or delete any author attributions, copyright notices or legal or other proper notices or proprietary designations or labels of the origin or source of software or other material contained in a file that is uploaded, or that is provided with Site materials or accessed through the Site. 
  • Violate any code of conduct or other guidelines, including without limitation Partner Terms, which may be applicable to any particular Site services. 
  • Harvest or otherwise collect information about others, including e-mail addresses, without their prior express written consent. 
  • Post on, transmit to or upload from the Site any content that discusses illegal activities with the intent to commit them, including activities that are intended to assist others in defeating technical copyright protections, or otherwise use the Site in any manner that endorses or promotes illegal activities. 
  • Use the Site in any manner which could damage, disable, overburden, or impair the Site or interfere with any other party's use and enjoyment of the Site. 
  • Use the Site to access or use a third party site, including without limitation the site of a Partner, in a manner prohibited by the terms and conditions applicable to the access or use of such third party site. 
  • Obtain or attempt to obtain any materials or information through any means not intentionally made available or provided for through the Site. 
  • Violate any applicable laws or regulations or violate this Agreement. 
  • Send any bulk commercial email, or send any unsolicited email to any party that has indicated that it does not wish to receive such email. 
  • Access or attempt to access any other user’s account, or misrepresent or attempt to misrepresent your identity while using the Site. 
  • Use the Site in any manner that could create a risk to a person’s safety or health, creates a risk to public safety or health, compromises national security, or interferes with an investigation by law enforcement. 
  • Post on, transmit to or upload from the Site any content that violates another party’s privacy or infringes another party’s intellectual property, including, but not limited to, such party’s copyrights, trademarks, trade secrets, patents or other confidential or proprietary information. Examples of materials that may be covered by copyright include software, graphics, text, photographs, sound, video and musical recordings. 
  • Use the Site in any manner that does not treat other users with respect, such as insulting another individual or posting discriminatory material aimed at an individual or a group of people based upon cultural background, gender, race, sexual orientation, religious beliefs or similar. 
  • Post information about physicians, including rating or discussing individual clinicians (finding a physician is a very personal decision; what might be a good fit for one person would not be good for another – if you would like IDF to supply the names of immunologists located in your area, please contact IDF by emailing: idf@primaryimmune.org).

Disclosure Under Law - IDF reserves the right at all times to disclose any information as necessary to satisfy any applicable law, regulation, legal process or governmental request, including personally identifiable information, or to edit, refuse to post or to remove any information or materials, in whole or in part, in IDF’s sole discretion if we believe you have violated this Agreement. 

Providing Correct Personal Information - In the course of using the Site, you may be required to enter certain information, including without limitation personal information (collectively, “Information”). You agree to provide IDF with full, true and correct Information, and to update such Information on the Site promptly as reasonably necessary and as required by the Site. Caution When Providing Information - Always use caution when giving out any information, including personally identifying information about yourself, in using any Site service. 

IDF does not control or endorse the content, messages or information found in any text, data, audio, video, audio/video or other materials or information posted by Site users to the Site or transmitted to other users or IDF through the Site (collectively, “Posted Materials”) and, therefore, IDF specifically disclaims any liability with regard to Posted Materials and any actions resulting from your use of Posted Materials. Site users are not authorized IDF spokespersons, and their views do not necessarily reflect those of IDF. In addition, any Posted Materials you provide to the Site may be viewed by anyone, and should be considered public information. 

Posting Limitations - Posted Materials may be subject to posted limitations on usage, reproduction and/or dissemination. You are responsible for adhering to such limitations if you download Posted Materials.

Posted materials 

License in Posted Materials. IDF does not claim ownership of any of the Posted Materials. However, by posting, transmitting, uploading, inputting, providing or submitting any Posted Materials, you are granting IDF, its affiliated companies and sublicensees a non-exclusive, royalty-free, perpetual, worldwide, irrevocable and fully sublicenseable license in and to such Posted Materials. For example, we have the right to: copy, distribute, transmit, display, perform, edit, translate, reformat and otherwise use Posted Materials, with or without attribution, and allow other Site users to do so as well, in all media known or hereafter developed. Where feasible, we will generally strive to include attribution provided by the poster in the event we post or use Posted Materials provided by such poster. You hereby waive all rights to any claim against IDF for any alleged or actual infringements of any proprietary rights, rights of privacy and publicity, moral rights, and rights of attribution in connection with such Posted Materials. 

Feedback. If you provide IDF with Posted Materials such as comments, bug reports, feedback or modifications proposed by you to IDF, the Site, or the goods and/or services provided through the Site (collectively, “Feedback”), then in addition to the license granted in all Posted Materials, IDF will have the right to use such Feedback at IDF’s discretion, including but not limited to incorporating such Feedback into the Site and the right to assign, license or otherwise use such Feedback. You hereby give IDF a perpetual, irrevocable, non-exclusive license under all rights necessary to incorporate such Feedback and use such Feedback for any purpose. 

No Compensation. No compensation will be paid with respect to the use of your Posted Materials, as provided herein. IDF is under no obligation to post or use any Posted Materials you may provide and may remove any Posted Materials at any time and for any reason (or no reason) in IDF's sole discretion. User Representations and Warranties - By posting, uploading, inputting, providing or submitting your Posted Materials, you (1) acknowledge that the Site is open to the public and therefore IDF cannot control who will access Posted Materials, or the use that any third party will make of any such materials, (2) represent and warrant that you own or otherwise control all of the rights to your Posted Materials necessary to grant the licenses granted in this Section (Posted Materials), including, without limitation, all the rights necessary for you to provide, post, upload, input or submit the Posted Materials, whether such right is established through direct ownership, express authorization of the copyright owner of the Posted Materials, or otherwise under law, (3) represent and warrant that your posting of the Posted Materials does not and will not violate or infringe any third party right, including but not limited to any third party intellectual property right, right of publicity or privacy, or contractual right, (4) agree that IDF shall not be liable to you or any third party for not accepting your Posted Materials for inclusion on the Site or for removing your Posted Materials, in whole or in part, from the Site, (5) agree that IDF shall not be liable to you or any third party for any consequence, including but not limited to any harm or damage, that may arise from the inclusion of your Posted Materials on the Site, including but not limited to any harm or damage that may result from the use by any third party of your Posted Materials in any manner, and (6) represent and warrant that you agree to be bound by and follow any Partner Terms applicable to any Partner Services that you use, and that you will only use such Partner Services if you comply with any eligibility requirements for use of such Partner Services that may be established by IDF or its respective Partners. 

Your Responsibility for Posted Materials and IDF’s Monitoring Rights. You will be responsible for your own Posted Materials and the consequences of posting or otherwise transmitting those Posted Materials. IDF does not represent or guarantee the truthfulness, accuracy, privacy, security, or reliability of any Posted Materials posted or otherwise transmitted by Site users or endorse any opinions expressed by such users. IDF has no obligation to monitor you or any other user’s use of the Site. IDF reserves the right to review and monitor your use of the Site, including without limitation your use of any user ID and/or password in accessing the Site and any materials posted to or revised on the Site, and to remove any materials in its sole discretion. IDF reserves the right to restrict or terminate your access to the Site, including, without limitation, your access to any or all of the services provided thereunder or your ability to use any Site user ID and/or password, at any time without notice if we believe you have violated this Agreement or are likely to violate this Agreement. Your sole remedy against IDF in the event of a dispute arising out of this Agreement, the Site or your use thereof, is to terminate this Agreement by ceasing your use of the Site. In the event of termination of this Agreement, IDF may delete and/or store, in its discretion, data associated with your use of the Site. IDF may also change, suspend, or discontinue any aspect of the Site at any time, including the availability of any Site feature, database, or content.

No Reliance or Medical Advice - The information contained on the Site is intended to provide broad consumer understanding of primary immunodeficiencies. The information should not be considered complete and should not be used in place of a visit or consultation, or of otherwise securing the advice of your physician or other healthcare provider. You acknowledge that neither IDF nor any Site users, while such users are participating in, accessing or otherwise using the Site, are engaged in rendering legal, medical, counseling, or other professional services or advice. We encourage you to seek appropriate professional advice from your physician or other healthcare professional promptly for any situation or problem that you may have. You should never disregard medical advice or delay seeking it because of something you have read on the Site. Disclaimer of Representations or 

Warranties - YOU AGREE THAT YOUR USE OF THE IDF SITE IS AT YOUR OWN RISK. EFFORTS BY IDF TO MODIFY THE SITE SHALL NOT BE DEEMED A WAIVER OF THESE LIMITATIONS. THE IDF SITE, INCLUDING ALL CONTENT, INFORMATION OR SERVICES PROVIDED THROUGH, OR IN CONJUNCTION WITH, THE SITE, IS PROVIDED "AS IS," AS A CONVENIENCE TO ALL USERS WITHOUT REPRESENTATION OR WARRANTY OF ANY KIND TO YOU OR ANY THIRD PARTY, INCLUDING, WITHOUT LIMITATION, ANY EXPRESS OR IMPLIED WARRANTIES (1) OF MERCHANTABILITY OR FITNESS FOR A PARTICULAR PURPOSE, (2) OF INFORMATIONAL CONTENT OR ACCURACY, (3) OF NON-INFRINGEMENT, (4) OF QUIET ENJOYMENT, (5) OF TITLE, (6) THAT THE SITE WILL OPERATE IN AN ERROR FREE, OR UNINTERRUPTED MANNER OR IS FREE OF VIRUSES OR OTHER HARMFUL COMPONENTS, (7) THAT ANY DEFECTS OR ERRORS IN THE SITE WILL BE CORRECTED, OR (8) THAT THE SITE IS COMPATIBLE WITH ANY PARTICULAR HARDWARE OR SOFTWARE PLATFORM. Disclaimer of Liability - IN NO EVENT SHALL IDF OR ANY OF ITS OFFICERS, DIRECTORS, AGENTS, EMPLOYEES, PARTNERS, SUBLICENSEES, SUCCESSORS AND ASSIGNS (COLLECTIVELY, WITH IDF, THE “IDF ENTITIES”) BE LIABLE TO YOU OR ANY THIRD PARTY FOR ANY LOSS OF PROFITS, LOSS OF USE, LOSS OF DATA, INTERRUPTION OF BUSINESS, OR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL OR CONSEQUENTIAL DAMAGES ARISING OUT OF OR IN ANY WAY CONNECTED WITH THE USE OF THE IDF SITE OR WITH THE DELAY OR INABILITY TO USE SAME, OR WITH HYPERTEXT OR GRAPHIC LINKS TO THIRD PARTIES, OR FOR ANY BREACH OF SECURITY ASSOCIATED WITH THE TRANSMISSION OF SENSITIVE INFORMATION THROUGH THE IDF SITE OR ANY LINKED SITE, OR FOR ANY INFORMATION, PRODUCTS, AND SERVICES OBTAINED THROUGH OR VIEWED ON THE IDF SITE, OR OTHERWISE ARISING OUT OF THE USE OF SAME, WHETHER BASED ON CONTRACT, TORT, STRICT LIABILITY, REGULATION, COMMON LAW PRECEDENT OR OTHERWISE, EVEN IF IDF HAS BEEN ADVISED OF THE POSSIBILITY OF DAMAGES AND EVEN IF SUCH DAMAGES RESULT FROM IDF’S NEGLIGENCE OR GROSS NEGLIGENCE. BECAUSE SOME STATES/JURISDICTIONS DO NOT ALLOW THE EXCLUSION OR LIMITATION OF LIABILITY FOR CONSEQUENTIAL OR INCIDENTAL DAMAGES, THE ABOVE LIMITATION MAY NOT APPLY TO YOU. IN SUCH STATES, IDF'S LIABILITY SHALL BE LIMITED TO THE FULLEST EXTENT PERMITTED BY LAW. ADDITIONAL DISCLAIMERS APPEAR WITHIN THE BODY OF THIS SITE AND ARE INCORPORATED HEREIN BY REFERENCE. TO THE EXTENT ANY SUCH DISCLAIMERS PLACE GREATER RESTRICTIONS ON YOUR USE OF THIS SITE OR THE MATERIAL CONTAINED THEREIN, SUCH GREATER RESTRICTIONS SHALL APPLY.

Linked Sites Disclaimer - The Site may contain links to third-party websites, including without limitation other websites providing articles or RSS feeds (“Linked Sites”). The Linked Sites are not under the control of IDF and IDF is not responsible for the contents of any Linked Site, including without limitation any link contained in a Linked Site, or any changes or updates to a Linked Site. Such links by the Site to sites maintained by third parties do not constitute an endorsement, guaranty, or warranty by IDF, or any of its affiliates, of any third party or their content, nor the existence of a partnership, joint venture, agency, or other relationship between IDF, or any of its affiliates, and any linked third party or their content. IDF is not responsible for webcasting or any other form of transmission received from any Linked Site. IDF is providing these links to you only as a convenience, and the inclusion of any link does not imply any association with its operators. You enter any Linked Site at your own risk, and should carefully review their terms of use, privacy statements, and other conditions of use for such sites prior to using such sites. 

Third-Party Offer Disclaimer - By offering a number of third-party products and services, including advertisements, on the Site, IDF makes no warranties or representations of any kind as to the content or suitability of the subject matter of any website, product or service from any such third party business or individual. IDF expressly disclaims liability for direct, consequential, or incidental damages arising from the products, services, advertisements, actions, or website content of these and any other third parties, and you waive any claims against IDF for damages arising from such transactions or your reliance upon statements contained therein. You will not consider IDF, nor will IDF be construed as, a party to such transactions, whether or not we may have received some form of revenue or other remuneration in connection with the transaction. The merchants or other third parties operating such third-party sites are responsible for all aspects of order processing, fulfillment, billing, and customer service. 

You agree that use of such merchants is AT YOUR SOLE RISK AND IS WITHOUT WARRANTIES OF ANY KIND BY US, EXPRESSED, IMPLIED, OR OTHERWISE INCLUDING WARRANTIES OF TITLE, FITNESS FOR PURPOSE, MERCHANTABILITY, AND/OR NONINFRINGEMENT. UNDER NO CIRCUMSTANCES IS IDF LIABLE FOR ANY DAMAGES ARISING FROM THE TRANSACTIONS BETWEEN YOU AND MERCHANTS FOUND ON THE IDF SITE OR FOR ANY INFORMATION APPEARING ON MERCHANT SITES OR ANY OTHER SITE LINKED FROM OR TO OUR SITE.

You will indemnify, defend (or settle) and hold harmless the IDF Entities from all claims, actions, proceedings, losses, settlements, judgments, liabilities, suits, damages, disputes or demands, including without limitation any proceeding, investigation or claim by a self-regulatory organization, state or federal securities agency or commission, and including reasonable attorneys fees and all other costs, fees, and expenses (collectively, “Claims”) against any of the IDF Entities to the fullest extent permitted by law arising out of or in connection with (1) your use of the Site or any Posted Materials, including without limitation your use of any Partner Services, or the use by any third party of such materials through you, (2) any Posted Materials provided or made available by you, and (3) any breach by you of your obligations under this Agreement, including without limitation any breach of your representations and warranties herein or within any applicable Partner Terms. In connection with any Claims that may give rise to your indemnification obligations as set forth above, the IDF Entities shall have the exclusive right, at their option, to defend, compromise and/or settle the suit, action or proceeding, and you shall be bound by the determination of any suit, action or proceeding so defended or any compromise or settlement so effected. The remedies provided in this Section are not exclusive of and do not limit any other remedies that may be available to the IDF Entities pursuant to this Section.

Confidentiality of Account and Password - You are responsible for maintaining the confidentiality of your account and password, if any, and for restricting access to your computer. You accept full responsibility and liability for all activities that occur under your account or password. IDF reserves the right to refuse service, terminate accounts, or remove content in its sole discretion. For certain services made available by IDF through this Site (“IDF Services”), you may be required to register; as part of the registration process, you must select a user name, and in some cases you maybe required to agree to specific additional terms and conditions associated with the IDF Services you wish to access. The information that you supply during any registration process must be accurate and complete and you agree to not (1) register under the name of another person, (2) choose a user name that IDF deems offensive, or (3) choose a user name for the purposes of deceiving or misleading forums members and/or staff as to your true identity. You agree to not impersonate any other person, including any other IDF forum member, any IDF forum host or any IDF staff. Notification of Unauthorized 

Use/Ceasing Access - You shall notify IDF immediately of any unauthorized use or threat of unauthorized use of your account or the Site or of any other breach or potential breach of security known to you with respect to your account or the Site, including without limitation any loss or compromise of any password, and will cooperate with IDF in every reasonable way to help IDF prevent the further unauthorized use, threat of unauthorized use, disclosure or threat of disclosure regarding the Site, your account and/or your password. You agree that immediately upon termination of your right to use the Site, or upon any earlier demand by IDF at any time, you will cease all access and/or use of the Site, and will not attempt to access and/or use the Site.

Copyright and other intellectual property 

Site Ownership -The Site and all content, organization, graphics, design, compilation, magnetic translation, digital conversion, and other matters related to the Site are protected under applicable copyrights, trademarks, and other proprietary (including but not limited to intellectual property) rights pursuant to international conventions and U.S. and other copyright laws. The Site and all Site content is the property of IDF and/or third-party licensors, including users posting Posted Materials, and all right, title and interest in and to the Site and Site content will remain with IDF or such third-party licensors. Other product and company names mentioned herein may be the trademarks of their respective owners. The Site, including all Site content, is only for your personal, non-commercial use. You do not acquire ownership rights to any content, document, or other materials viewed through or posted on the Site. The posting of information or materials on the Site does not constitute a waiver of any right in such information and materials. You will abide by any and all additional copyright notices, information, or restrictions contained in any content on the Site. Any copying, republication, or redistribution of Site content, including by caching, framing, or similar means, is expressly prohibited without the prior written consent of IDF and/or the respective intellectual property rights holder identified in the subject content. 

Copyright Infringement Claims - IDF respects the intellectual property rights of others and expects our users to do the same. The policy of IDF is to terminate the accounts of repeat copyright offenders and other users who infringe upon the intellectual property rights of others. If you believe that your work has been copied in a way that constitutes copyright infringement, please provide IDF's Designated Copyright Agent, identified below, with the following information required by the Online Copyright Infringement Liability Limitation Act of the Digital Millennium Copyright Act (“DMCA”), 17 U.S.C. § 512: (1) a physical or electronic signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed; (2) identification of the copyright work claimed to have been infringed, or, if multiple copyrighted works at a single online site are covered by a single notification, a representative list of such works at that site; (3) identification of the material that is claimed to be infringing or to be the subject of infringing activity and that is to be removed or access to which is to be disabled, and information reasonably sufficient to permit us to locate the material; (4) information reasonably sufficient to permit us to contact the complaining party; (5) a statement that the complaining party has a good-faith belief that use of the material in the manner complained of is not authorized by the copyright owner, its agent, or the law; (6) a statement that the information in the notification is accurate, and under penalty of perjury, that the complaining party is authorized to act on behalf of the owner of an exclusive right that is allegedly infringed; and (7) any other materials or information as may be required by the DMCA as amended from time to time. 

Copyright Agent - Pursuant to the DMCA, written notification of claimed copyright infringement must be submitted to the IDF Designated Copyright Agent using the following contact information: 

Tammy Black 
idf@primaryimmune.org 
7550 Teague Road, Hanover, MD 21076 
Phone:  (410) 321-6647 

ALL INQUIRIES NOT RELEVANT TO THE ABOVE PROCEDURE WILL RECEIVE NO RESPONSE.

Binding Arbitration - You and IDF each agree to submit to binding arbitration in the event of a dispute, controversy or claim (each, a “Dispute”) arising out of or in connection with this Agreement, your or IDF’s rights and obligations under this Agreement, the Site, the use of the Site, and/or the information, services and/or products that may be provided by or through or in connection with the Site. The arbitration will be held in the State of Maryland before one arbitrator on an individual basis and not as a class action. You expressly waive any right you may have to arbitrate a dispute as a class action. You also expressly waive your right to a jury trial. At the option of the first party to commence an arbitration, the arbitration will be administered either by the National Arbitration Forum, Box 50191, Minneapolis, MN 55405-0191 (www.arb-forum.com), or JAMS, Two Embarcadero Center Suite 1100 San Francisco, CA 94111 (www.jamsadr.com). In the event you are the first party to commence an arbitration, and you fail to select an arbitration organization within 30 days after providing notice to IDF of such arbitration, IDF may select the organization. You may obtain a copy of the rules of each organization by contacting the organization. In the event that any Dispute cannot be submitted to binding arbitration pursuant to the rules of any such organization, such event shall not affect the enforceability of this clause so long as the Dispute may be submitted to binding arbitration with one of the organizations. You and IDF shall agree on one arbitrator to conduct the arbitration and the arbitrator shall be selected pursuant to the applicable rules. Each party shall be responsible for its own attorney, expert and other fees, unless such fees are awarded by the arbitrator to the prevailing party. Notwithstanding anything to the contrary in this Section, to the extent you have in any manner violated or threatened to violate IDF’s intellectual property rights, IDF may seek (and you will not contest) injunctive or other appropriate relief in any state or federal court in the State of Maryland, and you consent to exclusive jurisdiction and venue in such courts. 

Arbitration Final - The arbitrator's award is final and binding on all parties. The Federal Arbitration Act, and not any state law concerning arbitration, governs all arbitration under this clause. Any court having jurisdiction may enter judgment on the arbitrator's award. If any part of this clause, other than waivers of class action rights, is deemed or found to be unenforceable for any reason, the remainder shall remain enforceable. Notwithstanding anything to the contrary contained herein, if the waiver of class action rights contained herein is not enforceable as to any person or persons, such non-enforceability shall apply to such person or persons only, and all other persons shall continue to be governed by the Arbitration Clause. 

Giving Up Right of Class Action - This Agreement provides that all Disputes will be resolved by binding arbitration and not in court or by jury trial. IF A DISPUTE IS ARBITRATED, YOU GIVE UP YOUR RIGHT TO PARTICIPATE AS A CLASS REPRESENTATIVE OR CLASS MEMBER ON ANY CLASS CLAIM YOU MAY HAVE AGAINST THE IDF ENTITIES INCLUDING ANY RIGHT TO CLASS ARBITRATION OR ANY CONSOLIDATION OF INDIVIDUAL ARBITRATIONS. WITHOUT LIMITATION, THIS INCLUDES GIVING UP YOUR RIGHTS TO BRING OR PARTICIPATE IN A CLASS ACTION AS SET FORTH IN ANY STATE STATUTE. 

California Residents - If you are a California resident, to the extent permitted by California law, you waive California Civil Code Section 1542, which states: “A general release does not extend to claims which the creditor does not know or suspect to exist in his favor at the time of executing the release, which if known by him must have materially affected his settlement with the debtor” as well as any other unknown claims under California Civil Code Section 1542 or any statute or common law principle of similar effect.

To the maximum extent permitted by law, this Agreement is governed by the laws of the State of Maryland, excluding any law or conflicts of law principle that would apply the law of another jurisdiction. To the extent a Dispute is not governed by the Arbitration Clause, you hereby consent to the exclusive jurisdiction and venue of courts in the State of Maryland in all disputes arising out of or relating to the use of the Site or under this Agreement; provided, however, that in the event IDF is sued or joined by a third party in any other court or in any other forum in respect of any matter which may give rise to a claim by IDF hereunder, you consent to the jurisdiction of such court or forum over any claim which may be asserted by IDF therein. You irrevocably consent to the exercise of personal jurisdiction by such courts in any such action. In addition, and notwithstanding the foregoing, you irrevocably waive, to the fullest extent permitted by law, any objection that you may now or hereafter have to the laying of the venue of any such suit, action or proceeding brought in any such court and any claim that any such suit, action or proceeding brought in any such court has been brought in an inconvenient forum. Final judgment in any such suit, action or proceeding brought in any such court shall be conclusive and binding upon you and may be enforced in any court in which you are subject to a jurisdiction by a suit upon such judgment. Use of the Site is unauthorized in any jurisdiction that does not give effect to all provisions of these terms and conditions, including without limitation this paragraph. To the extent a claim is not governed by the Arbitration Clause, IDF and you each hereby waive the right to a trial by jury in any court and in any suit, action or proceeding, whether in tort, contract, or otherwise, in which any such party is a party, as to any claim arising out of or in connection with this Agreement, your or IDF’s rights and obligations under this Agreement, the Site, use of the Site, and/or the services and/or products that may be provided by or through or in connection with the Site.

Viewing Outside the United States - IDF makes no claims that the Site may be lawfully viewed, accessed or used outside the United States. Access or use of the Site may not be legal by certain persons or in certain countries. If you access or use the Site from outside of the United States, you do so at your own risk and you are responsible for compliance with the laws of your jurisdiction. 

No Joint Venture - You agree that no joint venture, partnership, employment or agency relationship exists between you and IDF as a result of this Agreement or your use of the Site. 

No Waiver - The failure of IDF to enforce any provision of this Agreement will not be construed as a waiver or limitation of IDF’s right to subsequently enforce and compel strict compliance with that provision or any other provision of this Agreement. Assignment - No assignment, delegation or other conveyance of this Agreement may be made by you (by operation of law or otherwise) without the prior written consent of IDF, to be given in its sole discretion. IDF may assign its rights and obligations hereunder to any other party. 

Statute of Limitations - Any cause of action you may have with respect to your use of the Site must be commenced within one year after the claim or cause of action arises. 

Agreement Binding - If for any reason a court of competent jurisdiction finds any provision of this Agreement, or portion thereof, to be unenforceable, that provision shall be enforced to the maximum extent permissible so as to affect the intent of the Agreement, and the remainder of this Agreement shall continue in full force and effect. 

Notices - Notices to IDF under this Agreement shall be sufficient only if in writing and transmitted via personal delivery, delivered by a major commercial rapid delivery courier service, or mailed, postage or charges prepaid, by certified or registered mail, return receipt requested, to IDF, with such notices being effective as of the date of actual, confirmed receipt by IDF. Notices to you are deemed effective if sent to the email, fax, mail address or other contact information provided by you, and are deemed effective upon the earlier of being confirmed received or 1 day after having been sent. 

Entire Agreement - This Agreement and the Policy contain the entire agreement between you and IDF with respect to the Site. It supersedes all prior or contemporaneous communications and proposals, whether electronic, oral or written, between the user and IDF with respect to the Site.; provided that any additional terms and conditions applicable to any of the IDF Services shall be deemed a part of this Agreement; and further provided, that in the event of a conflict between any of the terms or conditions of this Agreement and/or the Policy and any of the terms or conditions of the terms of use applicable to the IDF Service accessed, the conflicting provision(s) of the terms of use for the IDF Service shall control. Any rights not expressly granted herein are reserved. A printed version of this Agreement and of any notice given in electronic form shall be admissible in judicial or administrative proceedings based upon or relating to this Agreement to the same extent and subject to the same conditions as other business documents and records originally generated and maintained in printed form. It is the express wish of the parties that this Agreement and all related documents be drawn up in English. The headings and other captions in this Agreement are for convenience and reference only and shall not be used in interpreting, construing or enforcing any of the provisions of this Agreement. Those terms and conditions of this Agreement that assign liabilities to the parties extending beyond the term of this Agreement shall survive termination of this Agreement.

Inquiries regarding this policy should be directed to idf@primaryimmune.org.

Additional Policies

Policy updated June 2022

General security protocols

  • IDF will only ever ask for your username, password, or identifying information on our own secure websites (primaryimmune.org, community.primaryimmune.org, walkforpi.org) and not as a response to an email or text message.
  • No individual representing IDF will ever ask you to make a purchase at your own expense to be reimbursed by IDF at a later time.
  • If we contact you via email, text, or messenger, we will never ask you to provide personal details or request that you make a purchase.
  • If you receive a call, email, text message, or social media message asking for personal information from a number claiming to be IDF, or an IDF employee, do not respond. Instead, disengage from that person and contact IDF to report the interaction to support@primaryimmune.org or by calling us at 410-321-6647.

It's also a good idea to report any spam to your own providers (your mobile and email providers typically have specific instructions to do so).

Use of encrypted email

While IDF is not a medical system or healthcare provider, we take protecting constituent data and privacy very seriously. We have implemented a new protocol to encrypt any emails that contain either personal health information (PHI) or personally identifiable information (PII).

When the Health Insurance Portability and Accountability Act (HIPAA) was established in 1996, there were no smartphones or wirelessly connected medical devices, and very few care providers stored electronic protected health information. In fact, many people did not have computers (or computing devices of any kind) in their homes.

Today, communication systems allow for the sharing of personal information via laptops, tablets, and smartphones. Telehealth services now happen regularly via video conference. That convenience can come at a cost: more than 500 healthcare providers fell victim to ransomware attacks in 2020; data breaches put patients at risk of identity theft and financial fraud. IDF maintains physical, electronic, and procedural safeguards to protect the confidentiality and security of any personally identifiable information that you disclose to IDF. Stored customer information is kept in a secure environment where access is restricted to employees who need the information to perform a specific job. However, due to the nature of the internet, computer networks, systems, and other factors, no transmission of data over the internet is guaranteed to be completely secure.

WHAT IS AN ENCRYPTED EMAIL AND WHAT DOES THIS MEAN FOR COMMUNICATION WITH IDF?   
Because emails can be sent over unsecured Wifi networks and on multiple devices, they are extremely vulnerable. Email encryption involves disguising the content of an email message in order to protect potentially sensitive information from being read by anyone other than the intended recipient. Encryption will render the content unreadable for everyone except the intended recipients. In this case, that is you or IDF.

There is nothing that you have to do at the moment. Most emails (like newsletters, announcements, and emails that don’t include PII or PHI) will remain as they always have. But you may receive emails from IDF, either originating from IDF or as responses to inquiries, that are encrypted.  

An encrypted email will look like this:

Download and save the attached message. It will be an HTML document. Click to open the attachment. Once you open the attachment, you will have two choices: Sign in to a Microsoft account OR choose a one-time passcode. Choose the one-time passcode for the easiest experience.

Once you choose to get a passcode, one will be emailed to you. Type it into the open text box and read your email.

WHAT IS PERSONALLY IDENTIFIABLE INFORMATION (PII)?
Personally identifiable information (PII) encompasses any information that can be directly or indirectly linked to an individual’s identity, according to the National Institute of Standards and Technology (NIST).

PII includes, but is not limited to, Social Security numbers, passport numbers, driver’s license numbers, addresses, email addresses, photos, biometric data, or any other information that can be traced to one individual. Medical, educational, financial, and employment information all fall under PII.

WHAT IS PERSONAL HEALTH INFORMATION (PHI)?
Protected health information (PHI) is a subset of PII, but it specifically refers to health information shared with HIPAA-covered entities. Medical records, lab reports, and hospital bills are PHI, along with any information relating to an individual’s past, present, or future physical or mental health.

PHI includes any individually identifiable health information, whether physical or electronic, including names, addresses, medical records (including diagnoses), photos, or any other health information that can identify an individual. 

Policy updated: January 2023

Policy

The Immune Deficiency Foundation (IDF) encourages trustees and employees to observe high standards of business and personal ethics in the conduct of their duties and responsibilities. Employees and representatives of the organization should practice honesty and integrity in fulfilling their responsibilities and comply with all applicable laws and regulations. For volunteers, IDF has language in their general volunteer handbook and agreement.

The objective of the IDF Whistleblower Policy is to establish a policy to (1) encourage and enable trustees and employees to report internally suspected questionable or improper accounting or auditing matters, discrimination, professional misconduct, and/or suspected violations of applicable laws and regulations (herein collectively referred to as Concerns), so that IDF can address and correct inappropriate conduct and actions; (2) for the receipt and retention of reported Concerns; and (3) for the protection of those individuals reporting Concerns from retaliation, harassment, or adverse employment consequences related to complaints of organizational wrongdoing.

The policy includes reporting of actions, including but not limited to:
o    Theft
o    Deviations from generally accepted accounting principles or circumvention of IDF’s system of internal controls such that individually or collectively, the deviations and or circumventions could result in influencing the decisions of the users of the statements under consideration
o    Embezzlement of IDF’s funds
o    Financial reporting that is intentionally misleading
o    Improper or undocumented financial transactions
o    Improper destruction of records
o    Improper use of assets
o    Violations of the organization’s conflict of interest policy
o    Any other improper occurrences regarding cash, financial procedures or reporting
o    Submitting fraudulent or improper expense account reporting
o    Misappropriation or misuse of IDF’s resources
o    Authorizing or receiving compensation for goods not received or services not performed
o    Violation of discrimination and harassment, or other employee policies as stated in the IDF handbook by the President & CEO, by other leadership team members or which have been reported to the President & CEO and ignored
o    Professional misconduct, including but not limited to unethical relationships, abusive behavior, or abuse of power

Reporting Responsibility

Each trustee and employee of IDF has an obligation to report in accordance with this Whistleblower Policy within 90 days of discovering the violation.

Reporting Procedure

Employees should share their Concerns with someone who can address them properly. In most cases, their supervisor is in the best position to address a Concern. However, if the employee is not comfortable speaking with the supervisor about the Concern, the employee is encouraged to speak with someone in Human Resources or anyone in management with whom they are comfortable approaching. Supervisors and managers are required to report suspected Concerns to IDF’s Vice Chair of the Board of Trustees.

For suspected fraud, or when employees are not satisfied or are uncomfortable with following the open-door policy, employees should contact the Vice Chair of the Board of Trustees directly by email at report@primaryimmune.org

Trustees should submit Concerns in writing the Vice Chair of the Board of Trustees directly.

Handling of Reported Violations

The Executive Committee shall address all reported Concerns. The Vice-Chair shall notify the Committee, Chair of the Board of Trustees, and the President & CEO of any such report within three business days. The Vice-Chair will notify the sender and acknowledge receipt of the Concern within five business days, if possible. It will not be possible to acknowledge receipt of anonymously submitted Concerns.

All reports will be investigated by the Executive Committee, and appropriate corrective action will be recommended to the Board of Trustees if warranted by the investigation. In addition, action taken must include a conclusion and/or follow-up with the complainant for complete closure of the Concern.

The Executive Committee has the authority to retain outside legal counsel, accountants, private investigators, or any other resource deemed necessary to conduct a full and complete investigation of the allegations.

Authority of the Executive Committee

All reported Concerns will be forwarded to the Executive Committee in accordance with the procedures set forth herein. The Executive Committee shall have the authority to investigate all reported Concerns and report its findings and make appropriate recommendations to the Board of Trustees, with respect to those Concerns.

Acting in Good Faith

Anyone reporting a Concern must act in good faith and have reasonable grounds for believing the information reported indicates a violation of the law or constitutes an inappropriate accounting or financial practice. The act of making allegations that prove to be unsubstantiated, and that prove to have been made maliciously, recklessly, or with the foreknowledge that the allegations are false, will be viewed as a serious disciplinary offense and may result in discipline, up to and including termination of employment. Such conduct may also give rise to other actions, including civil lawsuits.

Confidentiality

Reports of Concerns, and investigations pertaining thereto, shall be kept confidential to the extent practical, consistent with the need to conduct an adequate investigation.

Disclosure of reports of Concerns to individuals not involved in the investigation will be viewed as a serious disciplinary offense and may result in discipline, up to and including termination of employment. Such conduct may also give rise to other actions, including civil lawsuits.

No Retaliation

This Whistleblower Policy is intended to encourage and enable trustees and employees to raise Concerns within the organization for investigation and appropriate action. With this goal in mind, no trustee or employee who, in good faith, reports a Concern shall be subject to retaliation or, in the case of an employee, adverse employment consequences related to whistleblower complaints. Moreover, an employee who retaliates against someone who has reported a Concern in good faith is subject to discipline up to and including termination of employment.

The Immune Deficiency Foundation (IDF) is a source of information on primary immunodeficiency diseases, providing individuals with helpful information and resources. The general information does not represent and is not a substitute for, professional services specifically including the practice of medicine or other professional advice. IDF specifically disclaims any personal liability, loss, or risk incurred as a consequence of the use and application, either directly or indirectly, of any information presented herein. All individuals should consult their medical or other competent professionals for healthcare, insurance coverage or similar guidance.

Email transmissions may contain CONFIDENTIAL, PRIVILEGED, and/or PROTECTED INFORMATION. It is intended solely for the use of the individual or entity to whom it is addressed. Email transmissions may contain information subject to federal and/or state privacy laws. If you are not the intended recipient, please notify the sender by email immediately, do not disseminate or copy the transmission, and delete it immediately.