Immune Deficiency Foundation
www.primaryimmune.org
Telephone: (800) 296-4433

The national non-profit organization dedicated to improving the lives of individuals affected by primary immunodeficiency disease through research and education.

International Patient Organization for Primary Immunodeficiencies (IPOPI)
www.ipopi.org

IPOPI is an international organization whose members are national patient organizations for the primary immune deficiencies. The web site provides general information on PID and resource contacts for patients and professionals worldwide.

Primary Immunodeficiency Association (PIA), United Kingdom
www.pia.org.uk

PIA is a patient organization that provides services for individuals affected by primary immune deficiencies in the United Kingdom. The web site contains a wealth of information about primary immune deficiency diseases.

The Jeffrey Modell Foundation
www.jmfworld.org
Telephone: (800) JEFF-844

A non-profit research foundation devoted to primary immune deficiency diseases.

Ataxia Telangiectasia (A-T) Children's Project
www.atcp.org

A non-profit organization dedicated to accelerating the research toward a cure for Ataxia Telangiectasia. They also provide educational literature on AT

Chronic Granulomatous Disease (CGD) Home Page
www.magicbydesign.com/cgd/guide/cgd.html

A web site designed to provide information about Chronic Granulomatous Disease. Periodic chat sessions are held for members of the group.

Hereditary Angioedema Association
www.hereditaryangioedema.com

An organization dedicated to providing education about Hereditary Angioedema or C1 Inhibitor Deficiency Disorder.

Severe Combined Immunodeficiency (SCID) Home Page
www.scid.net

A web site designed to provide information about Severe Combined Immunodeficiency Disease. The site includes an email listserve for parents to talk with others about this disorder.

XLP Research Trust
www.xlpresearchtrust.org

Promotes and funds research into the cause, management, symptoms and cure for X Linked Lymphoproliferative (XLP) Disease. Raises awareness of the disease, and is a point of contact and support for families affected by XLP.

Centers for Disease Control and Prevention, National Immunization Program
www.cdc.gov/nip/
Telephone: (888) CDC-FAXX

This division of the CDC provides information on general vaccinations and specific precautions for individuals affected with primary immune deficiencies.

Center for Biologics Evaluation and Research, FDA
www.fda.gov/cber/index.html
Telephone: (800) 835-4709

A division of the Food and Drug Administration (FDA) whose mission is to protect and enhance public health through regulation of biological products to ensure their safety, effectiveness and timely delivery to patients. This agency provides information on biological products, such as blood and plasma, including new product approvals, adverse events, product recalls and withdrawals.

National Institutes of Health (NIH)
www.nih.gov/health

This organization provides information on a national level about the advances in health, science and medical issues.

NIH Clinical Trials
www.clinicaltrials.gov
Clinical Trials Telephone: (800) 411-1222

The web site contains current information on clinical trials being conducted, some of which may be pertinent to primary immune deficiencies.

National Institute of Child Health and Human Development (NICHD)
www.nichd.nih.gov
Telephone: (877) 696-6775

A division of the NIH that provides general information on children's health issues, including an in-depth booklet on primary immune deficiencies.

U.S. Department of Health and Human Services (HHS)
www.dhhs.gov
Telephone: (877) 696-6775

This organization is the U.S. government's principal agency for protecting the health of all Americans and providing essential human services. The web site contains information on the departments numerous federal programs.

U.S. Department of Labor, Employment Standards Administration, Wage and Hour Division
www.dol.gov
Telephone: 1-866-4-USA-DOL (1-866-487-2365) TTY: 1-877-889-5627

The U.S. Department of Labor's Employment Standards Administration, Wage and Hour Division, administers and enforces the Family and Medical Leave Act (FMLA) for all private, state and local government employees, and some federal employees. FMLA entitles eligible employees to take up to 12 weeks of unpaid, job-protected leave in a 12-month period for specified family and medical reasons. Detailed information about FMLA is available at this web site.

Centers for Medicare and Medicaid Services
www.cms.hhs.gov

This organization is the federal agency that administers Medicare, Medicaid and the State Children's Health Insurance Program (SCHIP). The web site provides information on these programs and contains the initiatives put out by the Department of Health and Human Services such as the "Health Insurance Portability and Accountability Act." It also lists the state health insurance commissioners, which can be helpful in seeking health insurance assistance.

U.S. Department of Justice Civil Rights Division, Office of AD
www.usdoj.gov
Telephone: (800) 514-0301

This division of the government provides information to assist persons with disabilities and to help all communities better serve these individuals.

National Institute of Allergy and Infectious Diseases (NIAID)
www.niaid.nih.gov
Office of Communications Telephone: (301) 496-5717

This organization is a division of NIH that provides information about allergy and infectious diseases, and primary immune deficiencies to the public.

U.S. Equal Employment Opportunity Commission (EEOC)
www.eeoc.gov
Telephone: (800) 669-4000

The federal agency whose mission is to promote equal opportunity in employment through administrative and judicial enforcement of the federal civil rights laws and through education and technical assistance. The web site contains information on the agency, its current activities and legislative documents such as "The Americans with Disabilities Act," which protects civil rights in the areas of employment, public accommodation, transportation and telecommunications for people with disabilities, including developmental disabilities.

American Academy of Allergy, Asthma, and Immunology (AAAAI)
www.aaaai.org
Telephone: (313) 3371-8600
Physician Referral: (800) 822-2762

AAAAI is a professional organization for physicians who treat patients with allergies, asthma and immunologic disorders. Provides a worldwide referral system for physicians in various geographical regions.

National Marrow Donor Program (NMDP)
www.marrow.org
Telephone: (888) 999-6743

A non-profit organization that facilitates unrelated marrow and blood stem cell transplants for patients with life-threatening diseases who do not have matching donors in their families.

Canadian Immunodeficiencies Patient Organization (CIPO)
www.cipo.net

CIPO is the Canadian organization for primary immune deficiency diseases. Their web site provides general information on these disorders and contact information to become a member.

International Patient Organization for Primary Immunodeficiencies (IPOPI)
www.ipopi.org

IPOPI is an international organization whose members are national patient organizations for the primary immune deficiencies. The web site provides general information on PID and resource contacts for patients and professionals worldwide.

LAGID: Latin American Group for Primary Immunodeficiencies
www.lagid.Isumc.edu

A professional organization comprised of physicians from various Latino countries who are dedicated to promoting the awareness, diagnosis and treatment of primary immune deficiency diseases in these countries.

Primary Immunodeficiency Association (PIA), United Kingdom
www.pia.org.uk

PIA is a patient organization that provides services for individuals affected by primary immune deficiencies in the United Kingdom. The web site contains a wealth of information about primary immune deficiency diseases.

HEATH Resource Center
www.heath.gwu.edu
Telephone: (800) 544-32284

This organization is the national clearinghouse on post secondary education for individuals with disabilities. It provides information about educational support services, policies, procedures, adaptations and opportunities at American campuses, vocational-technical schools and other post secondary training sites.

National Dissemination Center for Children with Disabilities
www.nichcy.org
Telephone: (800) 695-0285

This organization is a national information and referral center that provides information on disabilities and disability-related issues for families, educators and other professionals. Specific information on early intervention programs, special education, individualized education programs, education rights and transition to adult life can be found through this organization.

Wrightslaw
www.wrightslaw.com

This web site is dedicated to helping individuals advocate for children with disabilities with regard to the education system and legal issues.

Children's Defense Fund
www.childrensdefense.org

A non-profit organization devoted to children's issues, including the Children's Health Insurance Program (CHIP). The web site provides information on these topics.

Invisible Disabilities Advocate
www.invisibledisabilities.com

This web site is designed to assist family and friends of affected individuals in understanding disabling illness and injury. Invisible Disabilities Advocate (IDA) provides helpful links to sites and organizations, and a support board for sufferers and their loved ones.

National Family Caregivers Association (NCFA)
www.nfcacares.org
Telephone: (800) 896-3650

A grass roots organization created to educate, support, empower and speak up for millions of Americans who care for chronically ill, aged, or disabled loved ones.

National Organization for Rare Disorders (NORD)
www.rarediseases.org
Telephone: (800) 999-NORD

This is a non-profit organization that provides information, programs and services for thousands of rare medical conditions, including primary immune deficiencies.

Patient Advocate Foundation
www.patientadvocate.org
Telephone: (800) 532-5274

A national non-profit organization that serves as an active liaison between the patient and their insurer, employer, and/or creditors to resolve insurance, job discrimination and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys.

Patient Notification System
www.patientnotificationsystem.org
Telephone: (888) UPDATE.U

This is a program developed by the Plasma Protein Therapeutics Association (PPTA) to notify patients who receive plasma products, such as IVIG, about product recalls.

A.C.C.E.S.S.
Telephone: (888) 700-7010

"Advocating for Chronic Conditions, Entitlements and Social Services": A program developed by Gentiva Health Services to assist families with social and economic problems that can develop when treating a chronic medical condition, such as a primary immune deficiency.

Families US
www.familiesusa.org
Telephone: (202) 628-3030

A non-profit organization dedicated to the achievement of high-quality, affordable health and long-term care for all Americans. The web site contains state and national resources.

Family Voices
www.familyvoices.org
Telephone: (505) 867-2368

A national organization that provides information and education concerning the health care of children with special health needs.

Health Insurance Resource Center
www.healthinsurance.org

A resource for families, individuals and the self-employed, this web site provides the tools to become a better-informed health insurance consumer. It is also possible to obtain quotes from reputable, financially stable insurance companies.

The Medicine Program
www.themedicineprogram.com

Volunteers who are dedicated to assisting the growing number of patients who cannot afford their prescription medication established this organization. Their function is to help patients who may qualify to enroll in one or more of the many patient assistance programs that provide prescription medication free-of-charge to individuals in need.

National Patient Travel Center
www.patienttravel.org
Telephone: (800) 296-3797

This is a non-profit organization that provides a variety of services to individuals and families seeking ways to travel long-distances for specialized medical evaluation, diagnosis and treatment.

NeedyMeds
www.needymeds.com

A non-profit Pennsylvania corporation that is a source of information on patient assistance programs and other programs that help people obtain health supplies and equipment.

SKIP: Sick Kids Need Involved People
Telephone: (212) 268-5999

This is an advocacy group which helps families receive financial aid, nursing services and government medical services that they may be entitled to for their chronically ill child.

USDA Food and Nutrition Information Center
www.nal.usda.gov

This web site provides general information and tips on maintaining a healthy lifestyle through good nutritional habits.

MayoClinic.com
www.mayoclinic.com

This web site is a service of the renowned Mayo Clinic health care system and provides a wealth of information on health and medical topics. New material is added every workday and is reviewed by Mayo Clinic experts.

WebMD
www.webmd.com

Contained on this commercial web site is information on general health, medical, and fitness issues.

Genetic Alliance
www.geneticalliance.org
Telephone: (800) 336-GENE

"An international coalition of families, health professionals, and genetic support organizations" that provides information, support and advocacy to those affected by genetic conditions, including primary immune deficiencies.

Intrexon Corporation
www.dna.com

A "genetics discovery company" that provides general information on DNA and genetic aspects of diseases such as inheritance and testing options.