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.
903-236-7079; 800-ASAP-282 (272-7282)
P.O. Box 1586
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.
29 Crest Loop
Works to improve the health of babies by preventing birth defects and infant mortality through programs of research, community services, education, and advocacy.
1550 Crystal Drive, Suite 1300
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.
203-744-0100; 800-999-6673; 844-259-7178 Spanish
55 Kenosia Avenue
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.
1600 Wilson Boulevard, Suite 800
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.
P.O. Box 491975