Are there good support groups for X-linked agammaglobulinemia?
There are several support groups or organizations for X-linked agammaglobulinemia that provide support, information, advice, referrals to physicians and medical centers, and up-to-date information on research and treatments. Support groups for X-linked agammaglobulinemia include:
Canadian Immunodeficiencies Patient Organization (CIPO)
362 Concession Road 12
Hastings Ontario K0L 1Y0
Phone: 877-262-2476 (toll-free)
Fax: 866-942-7651 (toll-free)
Jeffrey Modell Foundation/National Primary Immunodeficiency Resource Center
747 Third Avenue
New York NY 10017
Phone: 866-463-6474 (toll-free); 212-819-0200
Immune Deficiency Foundation (IDF)
40 West Chesapeake Avenue
Towson MD 21204
Phone: 800-296-4433 (toll-free)
International Patient Organization for Primary Immunodeficiencies
Firside Main Road
Cornwall, PL11 3LE United Kingdom
- Conley ME, Howard VC. X-linked Agammaglobulinemia. GeneReviews website. http://www.ncbi.nlm.nih.gov/books/NBK1453/ Accessed May 16, 2016.
- Cunningham-Rundles C. Agammaglobulinemia. The National Organization for Rare Disorders website. http://rarediseases.org/rare-diseases/agammaglobulinemia/
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Where do I find other people with X-linked agammaglobulinemia?
Support groups can put you in contact with other people or families that have X-linked agammaglobulinemia. Support groups for this disorder include the Canadian Immunodeficiencies Patient Organization (CIPO), the Immune Deficiency Foundation, the Jeffrey Modell Foundation/National Primary Immunodeficiency Resource Center, and the International Patient Organization for Primary Immunodeficiencies.
There are also online communities for rare disorders such as RareConnect, RareShare, and Inspire, which allow individuals and parents to share experiences and advice about dealing with rare disorders.
- The International Patient Organisation for Primary Immunodeficiencies website
- The Immune Deficiency Foundation website
- The Jeffrey Modell Foundation website
- The Canadian Immunodeficiencies Patient Organization (CIPO) website