Below you will find a variety of organizations and educational resources. We invite you to explore these resources by clicking on the titles below. Interested in including your organization? Click here to contact us
National Organizations and Consortiums
Immune Deficiency Foundation (IDF)
www.primaryimmune.org Telephone: (800) 296-4433 The Immune Deficiency Foundation is the national nonprofit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.
www.rarediseasesnetwork.org/cms/PIDTC The Primary Immune Deficiency 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.org The Jeffrey Modell Foundation is dedicated to early and precise diagnosis, meaningful treatments, and ultimately cures of primary immunodeficiency diseases.
Disease Specific Patient Groups and Organizations
Ataxia-Telangiectasia (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-T), a lethal genetic disease that attacks children, causing progressive loss of muscle control, cancer and immune system problems.
Chronic Granulomatous Disease Association (CGDA)
www.cgdassociation.org The CGD Association is an international, nonprofit group for patient support and promoting research into a cure for CGD.
Hereditary Angioedema Association
www.hereditaryangioedema.com Founded and staffed by HAE patients and HAE patient caregivers, U.S. Hereditary Angioedema Association, Inc. (US HAEA) is a nonprofit 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.
SCID, Angels for Life
http://www.scidangelsforlife.com/ The SCID, Angels for Life Foundation offers emotional support to affected families while also providing limited financial assistance to families currently going through treatment for Severe Combined Immune Deficiency (SCID).
Severe Combined Immunodeficiency (SCID) Home Page
www.scid.net The SCID Group is designed to help families dealing with Severe Combined Immune Deficiency (SCID) find a support network of similar families. Go to www.scid.net, and select the “SCID Email Listserv Support Group” to sign up.
Center for Biologics Evaluation and Research, FDA
www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CBER/ The Center for Biologics Evaluation and Research, FDA is 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 The National Institutes of Health (NIH) provide information on a national level about the advances in health, science and medical issues.
NIH Clinical Trials
www.clinicaltrials.gov ClinicalTrials.gov contains current information on clinical trials being conducted, some of which may be pertinent to primary immunodeficiency diseases.
National Institute of Child Health and Human Development (NICHD)
www.nichd.nih.gov A division of the NIH, 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 immunodeficiency diseases.
vaers.hhs.gov The Vaccine Adverse Event Reporting System (VAERS) is a national vaccine safety surveillance program co-sponsored by the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA).
U.S. Department of Health and Human Services (HHS)
www.dhhs.gov 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 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 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 website.
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.
National Institute of Allergy and Infectious Diseases (NIAID)
www.niaid.nih.gov Office of Communications Telephone: (301) 496-5717 The National Institute of Allergy and Infectious Diseases (NIAID) is a division of NIH that provides information about allergy and infectious diseases, and primary immunodeficiency diseases 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.
Medical Society Organizations
American Academy of Allergy, Asthma, and Immunology (AAAAI)
www.aaaai.org 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: http://allergist.aaaai.org/find/
American Association of Immunologists (AAI)
www.aai.org The American Association of Immunologists (AAI) is a professional association representing basic research scientists whose main professional focus is in the field of immunology.
Clinical Immunology Society (CIS)
www.clinimmsoc.org The Clinical Immunology Society (CIS) mission 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 (FOCiS)
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.
International Patient Organizations
Canadian Immunodeficiencies Patient Organization (CIPO)
Canadian Immunodeficiencies Patient Organization (CIPO) provides advocacy, support and education to all patients diagnosed with primary immunodeficiency diseases and not yet diagnosed, in Canada.
International Patient Organization for Primary Immunodeficiencies (IPOPI)
www.ipopi.org IPOPI is an international organization whose members are national patient organizations for the primary immunodeficiency diseases. The website provides general information on PI and resource contacts for patients and professionals worldwide.
European Society for Immunodeficiencies (ESID)
www.esid.org The European Society for immunodeficiency (ESID) is a nonprofit association striving to improve the knowledge in the field of primary immunodeficiency by encouraging research, developing educational programs and fostering cooperation among all those involved in the diagnosis, treatment and management of these diseases.
Latin American Society for Primary Immunodeficiencies (LASID)
www.lasid.org The Latin American Society for Primary Immunodeficiencies (LASID) is a professional organization comprised of physicians from various Latin American countries who are dedicated to promoting the awareness, diagnosis and treatment of primary immunodeficiency diseases.
HEATH Resource Center
www.heath.gwu.edu The HEATH Resource Center 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.
Center for Parent Information and Resources
www.parentcenterhub.org The Center for Parent Information and Resources 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.
www.wrightslaw.com Wrightslaw.com is dedicated to helping individuals advocate for children with disabilities with regard to the education system and legal issues
Patient Advocacy and Support Organizations
Children’s Defense Fund
www.childrensdefense.org The Children’s Defense Fund is a nonprofit organization devoted to children’s issues, including the Children’s Health Insurance Program (CHIP). The website provides information on these topics.
Invisible Disabilities Association
www.invisibledisabilities.com The Invisible Disabilities Association is designed to assist family and friends of affected individuals in understanding disabling illness and injury. It provides helpful links to sites and organizations, and a support board for sufferers and their loved ones.
National Family Caregivers Association (NCFA)
www.caregiveraction.org The National Family Caregivers Association (Caregiver Action Network) is a nonprofit organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.
National Organization for Rare Disorders (NORD)
www.rarediseases.org The National Organization for Rare Disorders (NORD) is a nonprofit organization that provides information, programs and services for thousands of rare medical conditions, including primary immunodeficiency diseases.
Patient Advocate Foundation
www.patientadvocate.org A national nonprofit 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 The Patient Notification System is a program developed by the Plasma Protein Therapeutics Association (PPTA) to notify patients who receive plasma products, such as immunoglobulin replacement therapy, about product recalls.
The United States Immunodeficiency Network (USIDNET) is funded by a cooperative agreement, U24AI086037, from the National Institute of Allergy and Infectious Diseases (NIAID) and the National Institutes of Health (NIH), awarded to the Immune Deficiency Foundation (IDF). NIAID supports basic and applied research to better understand, treat and ultimately prevent infectious, immunologic, and allergic diseases. We also thank our partners from Industry, Foundations and philanthropy for continued and generous support.