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The A-T Children's Project is a non-profit organization that raises funds to support and coordinate first-rate biomedical research projects, scientific conferences and a clinical center aimed at finding a cure or life-improving therapies for ataxia-telangiectasia, a lethal genetic disease that attacks children, causing progressive loss of muscle control, immune system problems, and a strikingly high rate of cancer, especially leukemia and lymphoma.
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We are an non-profit corporation dedicated to helping those with CGD and advancing research toward a cure.
CHOIR Stars for the Creative and Performing Arts
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C.H.O.I.R. Stars for the Creative and Performing Arts® is a non-profit organization committed to providing hope and inspiration through the creative and performing arts to teens and young adults with a variety of health conditions. Our organization holds weekend arts workshops throughout the year for teens and young adults with chronic health conditions and their siblings, and offers additional programming such as our multiple free family arts outings a year. In addition, we provide arts outreach to youth in hospitals, and provide awareness for the health conditions our C.H.O.I.R. families are facing.
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A resource for disabling conditions that can be considered severe enough by the Social Security Administration (SSA) to qualify a person for Social Security disability benefits.
These conditions can interfere with an individual’s ability to achieve gainful employment, thereby making that person eligible for SSDI or SSI benefits.
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Founded and staffed by HAE patients and HAE patient caregivers, we are a non-profit patient advocacy organization dedicated to serving persons with angioedema resulting from C1-Inhibitor deficiency. 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. Our goal is to increase awareness of Hereditary Angioedema by providing patients and physicians with authoritative and readily accessible information. We are committed to advancing and conducting clinical research designed to improve the lives of HAE patients and ultimately find a cure.
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The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.
Info 4 PI [Jeffrey Modell Foundation)
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INFO4PI is designed for patients and their families, physicians, researchers, government officials, pharmaceutical companies, industry, and the general public to be able to quickly and seamlessly access information on Primary Immunodeficiency diseases and to realize earliest precise diagnoses, appropriate treatments and sometimes cures of the more than 150 different PI diseases affecting more than 10,000,000 children and adults worldwide.
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The International Patient Organisation for Primary Immunodeficiencies (IPOPI) is an international not for profit organisation dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency (PID) patients worldwide.
New England Primary Immunedeficiency Network
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NEPIN was created as a community and resource for patients who are living with Primary Immunodeficiency and for their families.
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Patient Services, Inc. (PSI) is the "ground breaking" 501(c)(3) non-profit, charitable organization of its kind. Two decades ago, we recognized the importance of providing a “safety net” for patients with chronic illnesses who were struggling to keep up with expensive premiums and co-payments. Since 1989 we have led the charge to provide much needed patient assistance, soliciting donations to fund thousands of patients and their families in a myriad of disease areas.
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Caring for Caregivers
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Our mission is to increase awareness, benefit research, and provide parent and family education for those affected by SCID.
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Team Hope was created by individuals whose lives are affected by Primary Immunodeficiency Disease (PIDD). Team Hope is dedicated to raising awareness, funding, and support for those with Primary Immunodeficiency Disease in the New England area.
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The Wiskott-Aldrich Foundation is a non profit organization dedicated to fund research to find improved cures, provide up-to-date information and support for families living with Wiskott-Aldrich Syndrome around the world.
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