Where do I find other people with tuberous sclerosis?

Support groups are organizations that provide support, information, advice, referrals to physicians and medical centers, and up-to-date information on research and treatments. Support groups for tuberous sclerosis include the Tuberous Sclerosis Alliance in the United States, the Tuberous Sclerosis Association in the United Kingdom and the Tuberous Sclerosis Canada Sclerose Tubereuse.

There are also online communities for rare disorders such as RareConnect, RareShare, or Inspire, which allow individuals and parents to share experiences and advice about dealing with rare disorders.

Other Questions About Tuberous sclerosis

• Will my child outgrow tuberous sclerosis?
• Who else in my family should I test for tuberous sclerosis?
• Where do I find other people with tuberous sclerosis?
• Where can I get financial help for tuberous sclerosis?
• Where can caregivers of people with tuberous sclerosis get support?