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Immune Deficiency Foundation / Information About Primary Immune Deficiencies

Federal Organizations and Assistance Programs / National Organizations

International Organizations / Patient Advocacy and Support Organizations

Especially for Youth / General Health Issues

Immune Deficiency Foundation

 

Primary Immune Deficiency Foundation -

The Immune Deficiency Foundation (IDF) is the national non-profit health organization dedicated to improving the diagnosis and treatment of primary immune deficiency diseases through research and education. (www.primaryimmune.org)

Patient and Family Handbook for Primary Immunodeficiency Diseases.

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Information About Primary Immunodeficiencies

 

The Jeffrey Modell Foundation -   

The Jeffrey Modell Foundation is dedicated to early and precise diagnosis, meaningful treatments, and ultimately cures of primary immunodeficiencies.  (www.jmfworld.org)

Severe Combined Immnodeficiency (SCID) Homepage -

This site contains information about SCID with links to journal articles, latest research developments, and patient support. (www.scid.net)

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Federal Organizations and Assistance Programs

 

Healthfinder -

Healthfinder.gov is a Federal Web site 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 goverment and nonprofit health and human services information on the Internet. (www.healthfinder.gov)

U.S. Department of Education -

This site contains information for parents about education for children of all ages and abilities. (www.ed.gov/parents/landing.jhtml)

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National Organizations

 

American Academy of Allergy, Asthma, and Immunology (AAAAI) -

AAAI is a professional organization for physicians who treat patients with allergies, asthma and immunologic disorders. The organization provides a worldwide referral system for physicicians in various geographical regions.(www.aaaai.org)

Federation of Clinical Immunology Societies (FOCIS) -

FOCIS exists to improve human health through immunology by fostering interdisciplinary approaches to both understand and treat immune-based diseases. (www.focisnet.org)

National Marrow Donor Program (NMDP) -

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. (www.marrow.org)

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International Organizations

International Nursing Group for Immunodeficiencies (INGID) -

The purpose of 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.(www.ingid.org)

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Patient Advocacy and Support Organizations

National Disabilities Rights Network (NDRN) -

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. (www.ndrn.org)

National Organization for Rare Disorders (NORD) -

NORD is a non-profit organizationwhich provides information, programs and services for thousands of rare medical conditions, including primary immune deficiencies. (www.rarediseases.org)

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Especially for Youth

Band-aids and Blackboards -

Band-aids and Blackboards ia a Web site about growing up with medical problems. The site helps people understand what it is like, from the perspective of children and teens. There are seperate areas for kids, teens and adults. (www.lehman.cuny.edu/faculty/jfleitas/bandaides)

KidsHealth -

KidsHealth is a Web site that provides health information to kids, teens and parents. The site contains articles, animations, games and resources. (www.kidshealth.org)

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General Health Issues

HealthWeb -

HealthWeb is a collaborative project of health sciences libraries of the Greater Midwest Region (GMR) of the National Network of Libraries of Medicine (NN/LM) and those of the Committee for Instiutional Cooperation. (www.healthweb.org)

WebMD -

WebMD is a comercial Web site containing information on general health, medical and fitness issues. (www.webmd.com)

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