American Syringomyelia & Chiari Alliance Project (ASAP)

Non-profit organization that works to improve the lives of people with syringomyelia, Chiari malformations, and related disorders. Publishes a newsletter and offers other written information, videotapes, an annual conference, and other services.

Website

https://asap.org

Phone

903-236-7079; 800-ASAP-282 (272-7282)

Address

P.O. Box 1586
Longview,
TX 75606-1586

Bobby Jones Chiari & Syringomyelia Foundation

Nonprofit organization committed to disseminating accurate and current information about treatments for and best practices surrounding the management of Chiari malformation, syringomyelia & related cerebrospinal fluid disorders.

Website

https://bobbyjonescsf.org

Phone

718-966-2593

Address

29 Crest Loop
Staten Island,
NY 10312

March of Dimes

Works to improve the health of babies by preventing birth defects and infant mortality through programs of research, community services, education, and advocacy.

Website

https://www.marchofdimes.org/

Phone

888-MODIMES (663-4637)

Address

1550 Crystal Drive, Suite 1300
Arlington,
VA 22202

National Organization for Rare Disorders (NORD)

Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

Website

https://rarediseases.org

Phone

203-744-0100; 800-999-6673; 844-259-7178 Spanish

Address

55 Kenosia Avenue
Danbury,
CT 06810-1968

Spina Bifida Association

Non-profit association that provides information and referrals through a clearinghouse and toll-free number. Promotes research into the causes, treatment and prevention of Spina Bifida; conducts public awareness campaigns; and encourages socialization and training for people with Spina Bifida.

Website

https://www.spinabifidaassociation.org/

Phone

202-944-3285; 800-621-3141

Address

1600 Wilson Boulevard, Suite 800
Arlington,
VA 22209

Worldwide Syringomyelia & Chiari Task Force

Our mission is to educate the world about Syringomyelia. Our purpose is to educate the world about this disease and provide those diagnosed with hope. We’re confident that by providing durable medical equipment, prescription assistance, and excellent resources within the medical community, we can improve awareness among the medical community and the general public about the complex nature of this disease.

Website

https://www.wstfcure.org

Phone

914-510-2873

Address

P.O. Box 491975
Lawrenceville,
GA 30049