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Find A Cure Transit PIDD Resources:
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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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Products: Gammagard S/D, Gammagard
book: Honest Medicine by Julia Schopick
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HONEST MEDICINE introduces four lifesaving treatments that have been effectively treating--and in some cases curing--people for 25-90 years.
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Book: Your Medical Mind by Dr. Jerome Groopman that focuses on patient decision making
Cells That Heal Us From Cradle To Grave: A Quantum Leap in Medical Science
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book on stem cell research
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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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Products: Carimune NF, Hizentra, Privigen, Vivaglobin
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CVID Facebook group. Over 1000 members.
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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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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. Initially established as a cross-disciplinary meeting, FOCIS held its first Annual Meeting in 2001.
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Products: Flebogamma 5% and 10% DIF
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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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This forum is designed for you to share experiences, offer peer support, ask questions, make suggestions, share your ideas and most importantly, connect with others who are affected by PIDD.
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IG Living is the only magazine dedicated to patients who use immune globulin products and to their care providers.
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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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Products: Actimune (Interferon gamma-1b) injection for the treatment of Chronic Granulomatous Disease (CGD).
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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.
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Resources to support spiritual well-being for those with chronic illness. Scholarly articles on the inter-relationship between spirituality and medicine. My personal struggles living with an incurable metastatic cancer.
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.
Partnership for Prescription Assistance
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Site that help people who are uninsured get treatment.
Their services are free.
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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.
PIDD Informational Video on Child Assisted Infusion
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5 year old child, Matthew does his own SQIG Infusion for PIDD treatment
Rare Diseases Clinical Disease Network
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The Primary Immune Deficiency (PID) Treatment Consortium (PIDTC) consists of 14 major centers in North America whose shared goal is to improve the outcome of patients with rare, life threatening, inherited disorders of the immune system.
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Caring for Caregivers
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RockScar Love is inspiring passionate lives through clothing. We celebrate sexy scars, the lessons they teach us and the strength they create.
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Our mission is to increase awareness, benefit research, and provide parent and family education for those affected by SCID.
Informational site on SCID
Support Oliver Williams - WAS FB Group
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Facebook group focused on awareness about the need for bone marrow donors for Oliver Williams and so many others in need.
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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 United States Immunodeficiency Network (USIDNET), a research consortium, was established to advance scientific research in the primary immune deficiency diseases (PIDD) and specifically to:
* Assemble and maintain a registry of patients with primary immunodeficiency diseases to provide a minimum estimate of the prevalence of each disorder in the United States. Provide a comprehensive clinical picture of each disorder and act as a resource for clinical and laboratory research.
* Establish a multifaceted mentoring program to introduce new investigators into the field and stimulate interest and research in primary immune deficiency diseases.
* Establish an advisory/review committee to maintain a cell/DNA Repository of biologic material from well-characterized PIDD patients for the advancement of scientific research
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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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