New York Times Looks at Online Support Groups for Rare Diseases
The New York Times today looks at Internet support groups for patients with rare disorders and parents of children with these diseases. Because these disorders receive limited research funding, Web sites can be important for driving research and providing information to the public and the medical community, although the sites must take care to post information responsibly, the Times reports. For example, Dr. Vicki Ratner is an orthopedic surgeon and founder of the Interstitial Cystitis Association; the disease causes an inflammation of the bladder and typically affects women. The association's Web site, www.ichelp.com, includes scientific news, clinic trial updates, patient profiles, online surveys and recipes for restricted diets that can help treat the disease. David Hughes, whose two sons have X-linked alpha-thalassemia mental retardation syndrome, taught himself to create Web pages and in 1999 started an online support group that now includes 36 families. Hughes then created the International Rare Disease Support Network, which has links to more than 1,000 online groups for rare disorders. "If you've got cancer or arthritis, you can probably find a support group that meets locally in a church basement," Abbey Meyers, president of the National Organization for Rare Disorders, said, adding, "But if you have a rare disorder, you can feel very isolated. If you get into a chat room, you're suddenly communicating with people all over the world who have the same disease" (Tuller, New York Times, 6/3).This is part of the California Healthline Daily Edition, a summary of health policy coverage from major news organizations. Sign up for an email subscription.