Agammaglobulinemia, x-linked

Organizations

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

RR #2

Hastings Ontario K0L 1Y0

Canada

Phone: 877-262-2476 (toll-free)

Fax: 866-942-7651 (toll-free)

Email: info@cipo.ca

Website: cipo.ca

Jeffrey Modell Foundation/National Primary Immunodeficiency Resource Center

747 Third Avenue

New York NY 10017

Phone: 866-463-6474 (toll-free); 212-819-0200

Fax: 212-764-4180

Email: info@jmfworld.org

Website: www.info4pi.org

Immune Deficiency Foundation (IDF)

40 West Chesapeake Avenue

Suite 308

Towson MD 21204

Phone: 800-296-4433 (toll-free)

Email: idf@primaryimmune.org

Website: www.primaryimmune.org

International Patient Organization for Primary Immunodeficiencies

Firside Main Road

Downderry

Cornwall, PL11 3LE United Kingdom

Phone: 441503250668

Email: info@ipopi.org

Website: http://www.ipopi.org/

References
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Where do I find other people with X-linked agammaglobulinemia?

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.

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