This list of resources is divided into the following sections:
- Information about Primary Immunodeficiencies
- Disease Specific Patient Groups and Organizations
- National Organizations
- International Organizations
- Federal Organizations
- Government Support and Assistance Programs
- Patient Advocacy and Support Organizations
- Education Resources
- Genetic Issues
- Manufacturers and Assistance Programs
Information about Primary Immunodeficiencies
Immune Deficiency Foundation
www.primaryimmune.org 800-296-4433 The Immune Deficiency Foundation, founded in 1980, is the national non-profit patient organization dedicated to improving the diagnosis and treatment of patients with primary immunodeficiency diseases through research, education and advocacy.
International Patient Organization for Primary Immunodeficiencies
www.ipopi.org International Patient Organization for Primary Immunodeficiencies (IPOPI) is an international organization whose members are national patient organizations for primary immune deficiencies. The website provides general information on primary immunodeficiency disease and resource contacts for patients and professionals worldwide.
Primary Immune Deficiency Treatment Consortium (PIDTC)
https://www.rarediseasesnetwork.org/cms/PIDTC The Primary Immune Deficiency (PID) Treatment Consortium (PIDTC) consists of 42 centers in North America whose shared goal is to improve the outcome of patients with rare, life threatening, inherited disorders of the immune system.
The Jeffrey Modell Foundation
www.jmfworld.com 866-INFO-4-PI (866-463-6474) The Jeffrey Modell Foundation is dedicated to early and precise diagnosis, meaningful treatments, and ultimately cures of primary immunodeficiencies.
United States Immunodeficiency Network (USIDNET)
www.usidnet.org 866-939-7568 The United States Immunodeficiency Network (USIDNET), is an NIH-funded research program of the Immune Deficiency Foundation (IDF), established to advance scientific research in primary immune deficiency diseases.
Disease Specific Patient Groups and Organizations
A-T Children’s Project
www.atcp.org The A-T Children’s Project is a non-profit organization that raises funds to support and coordinate biomedical research projects, scientific conferences and a clinical center aimed at finding a cure for Ataxia-Telangiectasia, a lethal genetic disease that attacks children, causing progressive loss of muscle control, cancer and immune system problems.
Chronic Granulomatous Disease Association
www.cgdassociation.org The Chronic Granulomatous Disease Association (CGDA), founded in 1982, is a non-profit international support group for persons with chronic granulomatous disease (CGD), their families and physicians. The organization networks patients with similar CGD-related illnesses or infecting organisms. It provides research grants aimed at finding a cure for CGD.
Chronic Granulomatous Disease Association of America
www.cgdaa.org The Chronic Granulomatous Disease Association of America (CGDAA) is committed to advocating on behalf of patients, carriers, and families by providing clear, accurate, and independent news and information about CGD and advancing CGD research.
Hereditary Angioedema Association, Inc.
www.haea.org Founded and staffed by HAE patients and HAE patient caregivers, U.S. Hereditary Angioedema Association, Inc. (US HAEA) is a non-profit patient advocacy organization dedicated to serving persons with angioedema. The Association provides HAE patients and their families with a support network and a wide range of services including physician referrals, and individualized patient support.
Hyper IgM Foundation
www.hyperigm.org The Hyper IgM Foundation works to improve the treatment, quality of life and the long term outlook for children and adults living with Hyper IgM Syndrome through research, support, education and advocacy to families and patients.
Severe Combined Immune Deficiency
www.scid.net This site contains information about Severe Combined Immune Deficiency (SCID) with links to journal articles, latest research developments and patient support.
SCID Angels for Life
www.scidangelsforlife.com SCID Angels for Life is a non-profit organization that increases awareness, benefits research and provides parent and family education for those affected by Severe Combined Immune Deficiency (SCID).
www.wiskott.org This site provides information about Wiskott-Aldrich Syndrome (WAS). The links on this site include information for patients and families, the latest research related to WAS and financial support.
XLP Research Trust
www.xlpresearchtrust.org This organization 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.
American Academy of Allergy, Asthma, and Immunology (AAAAI)
www.aaaai.org 313-371-8600 Physician Referral Service: 800-822-2762 The American Academy of Allergy, Asthma, and Immunology (AAAAI) is a professional organization for physicians who treat patients with allergies, asthma and immunologic disorders. The organization provides a worldwide referral system for physicians in various geographical regions.
American Academy of Pediatrics
www.aap.org 847-434-4000 The American Academy of Pediatrics (AAP) is a professional organization for pediatricians. It is committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults.
Clinical Immunology Society
www.clinimmsoc.org 414-224-8095 The mission of the Clinical Immunology Society (CIS) is to facilitate education, translational research and novel approaches to therapy in clinical immunology to promote excellence in the care of patients with immunologic/inflammatory disorders.
Federation of Clinical Immunology Societies
www.focisnet.org The Federation of Clinical Immunology Societies (FOCIS) exists to improve human health through immunology by fostering interdisciplinary approaches to both understand and treat immune-based diseases.
Immunoglobulin Nursing Society
www.ig-ns.org Immunoglobulin Nursing Society (IgNS) is a professional organization dedicated to nursing professionals in education, management, practice and research in the field of immunoglobulin (Ig) therapy.
Infusion Nurses Society
www.ins1.org The Infusion Nurses Society (INS) is dedicated to exceeding the public’s expectations of excellence by setting the standard for infusion care.
National Marrow Donor Program
www.marrow.org 800-627-7692 The National Marrow Donor Program (NMDP) is 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.
European Society for Immunodeficiencies (ESID)
www.esid.org The European Society for Immunodeficiencies (ESID) is a non-profit medical organization. The purpose of ESID is to foster excellence in research and medical practice and to promote interaction with nurses and patient associations, so as to increase exchange of information among patients, parents of patients, nurses, doctors and researchers.
International Nursing Group for Immunodeficiencies (INGID)
www.ingid.org The purpose of the International Nursing Group for Immunodeficiencies (INGID) is to improve and extend the quality of nursing care of patients with primary immunodeficiencies, and to increase the awareness and understanding of primary immunodeficiencies amongst nurses. International Patient Organization for Primary Immunodeficiencies (IPOPI) www.ipopi.org The International Patient Organization for Primary Immunodeficiencies (IPOPI) is an international organization whose members are national patient organizations for primary immunodeficiencies. The site provides general information on primary immunodeficiency and resource contacts for patients and professionals worldwide. The following is a list of Member Organizations and International Support Groups:
- Argentina: www.aapidp.com.ar
- Austria: www.oespid.at
- Belarus: Andron116@yandex.ru
- Canada: www.cipo.ca
- Chile: firstname.lastname@example.org
- Colombia: www.fundacionfip.org.co
- Cyprus: Maria.email@example.com
- Denmark: www.idf.dk
- Estonia: firstname.lastname@example.org
- Finland: email@example.com
- France: www.associationiris.org
- Germany: www.dsai.de
- Greece: www.paed-anosia.gr
- Hungary: firstname.lastname@example.org
- Iceland: email@example.com
- India: www.ipspiindia.org
- Ireland: firstname.lastname@example.org
- Italy: www.aip-it.org
- Japan: www.npo-pidtsubasa.org
- Mexico: www.fumenip.org.mx
- Morocco: http://hajar-maroc.org/
- The Netherlands: www.stichtingvoorafweerstoornissen.nl
- New Zealand: www.idfnz.org.nz
- Norway: email@example.com
- Poland: www.immunoprotect.pl
- Portugal: firstname.lastname@example.org
- Romania: www.arpid.ro
- Russia: email@example.com
- Serbia: www.pospid.org
- South Africa: www.pinsa.org.za
- Spain: www.aedip.com
- Sweden: www.pio.nu
- Switzerland: www.svai.ch
- Turkey: www.imyed.org.tr
- United Kingdom: firstname.lastname@example.org
- United States www.primaryimmune.org, www.info4pi.org
- Venezuela: email@example.com
Latin American Group for Primary Immunodeficiencies (LAGID)
www.lagid.lsuhsc.edu The Latin American Group for Primary Immunodeficiencies (LAGID) is a professional organization comprised of physicians from various Latino countries who are dedicated to promoting the awareness, diagnosis and treatment of primary immunodeficiency diseases in these countries.
Centers for Disease Control and Prevention, National Immunization Program
www.cdc.gov/vaccines 800-CDC-INFO (800-232-4636) This division of the CDC provides information on general vaccinations and specific precautions for individuals affected with primary immunodeficiencies.
Center for Biologics Evaluation and Research, FDA
www.fda.gov/BiologicsBloodVaccines 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.
Centers for Medicare and Medicaid Services
www.cms.gov 800-633-4227 The Centers for Medicare and Medicaid Services (CMS) provides information for individuals receiving services from Medicare, Medicaid or SCHIP.
National Institutes of Health
U.S. Department of Health And Human Services: National Institutes of Health www.nih.gov 301-496-4000 The National Institutes of Health (NIH) provides information on advances in health, science and medical issues. The following are divisions of NIH:
- National Cancer Institute www.cancer.gov 800-422-6237 National Cancer Institute (NCI) provides the following information about cancer: topics, trials, statistics and research.
- National Heart, Lung and Blood Institute www.nhlbi.nih.gov 301-592-8573 The National Heart, Lung and Blood Institute (NHLBI) provides leadership for a national program in diseases of the heart, blood vessels, lung, and blood; blood resources; and sleep disorders.
- National Human Genome Research Institute www.genome.gov 301-402-0911 The National Human Genome Research Institute (NHGRI) applies genome technologies to the study of specific diseases and the genetic components of complex disorders.
- National Institute of Allergy and Infectious Diseases www.niaid.nih.gov Office of Communications: 301-496-5717 The National Institute of Allergy and Infectious Diseases (NIAID) is provides information on allergy and infectious diseases, as well as primary immunodeficiencies.
- National Institute of Child Health and Human Development www.nichd.nih.gov 800-370-2943 The National Institute of Child Health and Human Development (NICHD) provides general information on children's health issues, including an in-depth booklet on primary immunodeficiencies.
- NIH Clinical Trials www.clinicaltrials.gov 800-411-1222 The NIH Clinical Trials site contains current information on clinical trials being conducted, some of which may be pertinent to primary immunodeficiencies.
- NIH Health Information www.health.nih.gov This is an A-Z index of NIH health resources, clinical trials, MedlinePlus and health hotlines.
- NIH Office of Rare Diseases www.rarediseases.info.nih.gov 301-402-4336 The NIH Office of Rare Diseases (ORD) coordinates research on rare diseases and supports research to respond to the needs of patients who have any one of the more than 6,000 rare diseases known today.
- NIH Research Training and Scientific References www.nih.gov/science This site contains information about intramural research, Human Embryonic Stem Cell Registry, scientific interest groups, library catalogs, journals, training, labs, scientific computing and more.
- National Library of Medicine www.nlm.nih.gov 888-346-3656 The National Library of Medicine (NLM) is the world’s largest medical library. The library collects materials and provides information and research services in all areas of biomedicine and healthcare.
National Office of Public Health Genomics
www.cdc.gov/genomics 770-488-8510 This site provides updated information on how human genomic discoveries can be used to improve health and prevent disease. It also provides links to Centers for Disease Control and Prevention (CDC) activities in public health genomics.
U.S. Department of Education
www.ed.gov/parents/landing.jhtml This site contains information for parents about education for children of all ages and abilities.
U.S. Department of Health and Human Services
www.hhs.gov 877-696-6775 The U.S. Department of Health and Human Services (HHS) is the U.S. government’s principal agency for protecting the health of all Americans and providing essential human services. The site contains information on the department’s numerous federal programs.
U.S. Department of Labor: Continuation of Health Coverage (COBRA)
www.dol.gov/dol/topic/health-plans/cobra.htm COBRA gives workers and their families who lose their health benefits the right to choose to continue group health benefits provided by their group health plan for limited periods of time under certain circumstances such as voluntary or involuntary job loss, reduction in the hours worked, transition between jobs, death, divorce and other life events.
U.S. Department of Labor, Employment Standards Administration, Wage and Hour Division
www.dol.gov 866-4USA-DOL (866-487-2365) 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.
U.S. Equal Employment Opportunity Commission
www.eeoc.gov 800-669-4000 Individuals can find information about the Equal Employment Opportunity Commission (EEOC), its current activities and legislative documents such as The Americans with Disabilities Act (ADA), which protects civil rights in the areas of employment, public accommodation, transportation and telecommunications for people with disabilities, including developmental disabilities.
U.S. Social Security Administration
www.ssa.gov This website contains complete information about Social Security.
Government Support and Assistance Programs
www.benefits.gov This site includes program descriptions and contact information about federal and state assistance programs.
www.healthfinder.gov Healthfinder.gov is a Federal website for consumers, developed by the U.S. Department of Health and Human Services together with other Federal agencies. It is a key resource for finding government and nonprofit health and human services information on the Internet.
Hill-Burton Free and Reduced Cost Health Care
www.hrsa.gov/gethealthcare/affordable/hillburton In 1946, Congress passed a law that gave hospitals, nursing homes and other health facilities grants and loans for construction and modernization. In return, they agreed to provide a reasonable volume of services to persons unable to pay and to make their services available to all persons residing in the facility’s area. The program stopped providing funds in 1997, but about 300 healthcare facilities nationwide are still obligated to provide free or reduced-cost care.
State Health Insurance Assistance Program
www.seniorsresourceguide.com/directories/National/SHIP/index.html www.medicare.gov/contacts/organization-search-criteria.asp State Health Insurance Assistance Program (SHIP) provides counseling services to Medicare beneficiaries. They help assist patients in making educated, informed decisions on their healthcare benefits.
State Programs for Children with Special Needs
http://wdcrobcolp01.ed.gov/Programs/EROD/org_list.cfm States offer individual programs which provide medical assistance for children with special needs. These may offer assistance in covering medical expenses, help with finding a diagnosis, and other services depending on the state.
Patient Advocacy and Support Organizations
www.benefitscheckup.org Many older people need help paying for prescription drugs, healthcare, utilities and other basic needs. Ironically, millions of older Americans—especially those with limited incomes—are eligible for but not receiving benefits from existing federal, state and local programs. Ranging from heating and energy assistance to prescription savings programs to income supplements, there are many public programs available to seniors in need if they only knew about them and how to apply for them.
Caregiver Action Network
www.nfcacares.org 800-896-3650 The Caregiver Action Network (CAN) is a family caregiver organization working to improve the quality of life for those who care for loved ones with chronic conditions, disabilities, disease or the frailties of old age.
Children’s Defense Fund
www.childrensdefense.org 800-233-1200 The Children’s Defense Fund is a non-profit organization devoted to children’s issues, including the Children’s Health Insurance Program.
www.familiesusa.org 202-628-3030 Families USA is a non-profit organization dedicated to the achievement of high-quality, affordable health and long-term care for all Americans. The website contains state and national resources.
www.familyvoices.org 888-835-5669 Family Voices is a national organization that provides information and education concerning the healthcare of children with special health needs.
Health Insurance Resource Center
www.healthinsurance.org A resource for families, individuals and the self-employed, the Health Insurance Resource Center provides the tools to become a better-informed health insurance consumer.
Insure Kids Now
www.insurekidsnow.gov This site provides links to state child and adolescent health insurance programs.
Invisible Disabilities Association
www.invisibledisabilities.com The Invisible Disabilities Association (IDA) helps those living with various conditions, as well as their loved ones, through their website, articles, literature, projects and seminars.
The Medicine Program
www.themedicineprogram.com The Medicine Program is a patient advocacy organization helping individuals and families all across America get access to up to 2,500 prescription medications available today for free or nearly free of charge through Patient Assistance Programs.
National Committee for Quality Assurance
www.ncqa.org The National Committee for Quality Assurance (NCQA) is a private, not-for-profit organization dedicated to assessing and reporting on the quality of managed care plans.
National Disabilities Rights Network
www.ndrn.org The National Disabilities Rights Network (NDRN) is a non-profit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities.
National Family Caregivers Association
www.nfcacares.org 800-896-3650 The National Family Caregivers Association (NCFA) is 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
www.rarediseases.org 800-999-NORD The National Organization for Rare Disorders (NORD) is a non-profit organization which provides information, programs and services for thousands of rare medical conditions, including primary immunodeficiencies.
National Patient Travel Center
www.patienttravel.org 800-296-3797 The National Patient Travel Center 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.
www.needymeds.org NeedyMeds provides information on programs that help people facing problems paying for medications and healthcare; assists those in need in applying to programs; and provides health-related education using innovative methods.
Partnership for Prescription Assistance
www.pparx.org 888-4PPA-NOW (888-477-2669) The Partnership for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other healthcare providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them.
Patient Advocate Foundation
www.patientadvocate.org 800-846-4066 The Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
Patient Notification System
www.patientnotificationsystem.org 888-UPDATE-U (888-873-2838) The Patient Notification System is a program developed by the Plasma Protein Therapeutics Association (PPTA) to notify patients who receive plasma products, such as intravenous immunoglobulin (IVIG), about product recalls.
Patient Services Incorporated (PSI)
www.patientservicesinc.org 800-366-7741 Patient Services Incorporated (PSI) is a non-profit charitable organization dedicated to subsidizing the high cost of health insurance premiums and co-payments for persons with specific chronic illnesses, including primary immunodeficiencies.
www.rxassist.org Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that healthcare professionals and patients can find the information they need.
Save Babies Through Screening Foundation
www.savebabies.org 888-454-3383 Save Babies Through Screening Foundation educates parents, pediatric healthcare providers, and policy makers about available comprehensive newborn screening.
SKIP: Sick Kids Need Involved People
www.skipofny.org 212-268-5999 This is an advocacy group which helps families in the state of New York receive financial aid, nursing services and government medical services that they may be entitled to for their chronically ill child.
www.formspal.com/health-support FormsPal is one of the biggest free databases of legal forms online with the goal to support communities and individuals regardless of gender, age, nationality, or religion. Specifically, FormsPal provides a variety of healthcare forms including medical power of attorney (POA), living will, do-not-resuscitate orders (DNR), and healthcare proxy.
HEATH Resource Center
www.heath.gwu.edu 800-544-3284 The HEATH Resource Center is the national clearinghouse on postsecondary 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 postsecondary training sites.
National Information Center for Handicapped Children and Youth
www.nichcy.org 800-695-0285 National Information Center for Handicapped Children and Youth (NICHY) 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.
DNA from the Beginning
www.dnaftb.org DNA from the Beginning is an animated primer on the basics of DNA, genes and heredity, organized around key concepts. The science behind each concept is explained by: animation, image gallery, video interviews, problem, biographies and links.
www.geneticalliance.org 800-336-GENE The Genetic Alliance is an international coalition of families, health professionals, and genetic support organizations that provide information, support and advocacy to those affected by genetic conditions, including primary immunodeficiencies.
www.ncbi.nlm.nih.gov At this site one can enter a diagnosis and pull up scholarly articles about many primary immunodeficiency diseases.
Human Genome Project: Ethical, Legal, and Social Issues (ELSI)
www.ornl.gov/hgmis/elsi/elsi.html The ELSI division of the Human Genome Project is the world’s largest bioethics program devoted to studying these issues related to the availability of genetic information. The website contains information on genetic testing with regard to privacy and legislation, gene patenting, gene therapy and genetics used in the courtroom.
http://bioinf.uta.fi/idr/index.shtml Immunodeficiency Resource (IDR) is a compendium of information on the immunodeficiencies available online, including data for clinical, biochemical, genetic, structural and computational analyses. IDR includes also articles, instructional resources, analysis and visualization tools as well as advanced search routines.