Where do I find other people with CADASIL?

Support groups can put you in contact with other people or families that have CADASIL. Support groups include the cureCADASIL and CADASIL Together We Have Hope. The United Leukodystrophy Foundation also provides information and support for CADASIL.

There are also online communities for rare disorders such as [link url="RareConnect” target=”_blank”>RareConnect, RareShare, or Inspire, which allow individuals and parents to share experiences and advice about dealing with rare disorders. Facebook also has several groups that provide support for people with CADASIL.

Other Questions About CADASIL

• Who else in my family should I test for CADASIL?
• Where do I find other people with CADASIL?
• Where can I get financial help for CADASIL?
• Where can caregivers of people with CADASIL get support?
• When do the symptoms of CADASIL start?