It's a very rare condition that doesn't have at least one national organization that educates the public. To find it, ask your physician, or ask your doctor for a referral to a medical social worker. Or ask a librarian, or try an Internet search engine. In the unlikely event that no group exists that addresses your concern, the Self-Help Clearinghouse can help you start one. Most organizations that focus on chronic medical conditions also sponsor support groups for those with the condition.
Support groups are wonderful coping tools.
Support groups can provide emotional comfort, background information on your disease, opinions about treatments members have tried, recommendations to specialists, and friendship at a time when other friends and family members might not be able to meet your needs. In a support group, you get help, but you also give it, which helps you feel like you've regained control over your life. Support from fellow SeniorNet members might be all you feel you need. Or you can combine RoundTable discussions with an in-person support group in your area. Support groups do more than simply help people cope with chronic conditions.