This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.
Online. Unmoderated forums for patients and professionals dealing with myelodysplastic syndromes, a group of bone marrow diseases. Also has referrals to treatment centers.
Myelodysplastic Syndromes Foundati
4573 S. Broad Street, Ste 150
Yardville, NJ 08620
National. 10 chapters. Founded 1954. Offers education and networking for families affected by Cooley's anemia (thalassemia). Fund-raising for research. Newsletter, annual seminars, research grants, patient support group, patient services and chapter development guidelines.
Cooley's Anemia Foundation
330 Seventh Ave., Suite 200
New York, NY 10001
Voice: 1-800-522-7222 or 212-279-8090
International. 12 groups. Founded 1983. Offers a support network where patients and families can connect with others. Provides free educational materials for those affected by aplastic anemia, MDS and PNH, advocacy, newsletters, webinars, interactive online learning center, and funds research. Provides information on local support groups and helps people with starting local support groups.
Aplastic Anemia and MDS Int'l Fdn.
100 Park Ave., Suite 108
Rockville, MD 20850
Voice: 1-800-747-2820 or 301-279-7202