Angelman syndrome
Organizations
Are there good support groups for people with Angelman syndrome?
There are several support groups for families who have a loved one with a diagnosis of Angelman syndrome. As of June 1, 2016, support groups for Angelman syndrome include:
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Where do I find other people with Angelman syndrome?
How do I start a support group for people with Angelman syndrome?
What are some other ways to learn more about Angelman syndrome?
Where do I find other people with Angelman syndrome?
- The Angelman Syndrome Foundation has regional representatives that can help connect you with other families in your area. You can find a link to these resources, and other resources the Angelman Syndrome Foundation provides at: http://www.angelman.org/resources-education/regional-representatives/.
- The Angelman Syndrome Foundation holds annual Scientific Symposiums, as well as a biennial meeting for families, caregivers, educators, healthcare providers, and scientists to gather, collaborate, and share information about Angelman syndrome. You can learn more about this conference at: http://www.angelman.org/conferences-symposia/.
- The Angelman Syndrome Support Education and Research Trust in the UK sponsors national and regional conferences for families and professionals working with Angelman syndrome to meet. You can learn more about this conference at:http://angelmanuk.org/events-and-conferences-for-angelman-syndrome-assert/
How do I start a support group for people with Angelman syndrome?
If you are interested in setting up a local support group, you can reach out to the national and international support organizations listed below to see about creating a support group for your area. If you do begin a local support group, consider reaching out to Angelman syndrome specialty clinics to help get the word out to other families.
- Angelman Syndrome Foundation at http://www.angelman.org/
- Angelman Syndrome Support Education and Research Trust (UK) at http://www.angelmanuk.org/
- Canadian Angelman Syndrome Society at http://www.angelmancanada.org/
What are some other ways to learn more about Angelman syndrome?
There is an online magazine dedicated to Angelman syndrome called "Angelman Today" at http://www.angelmantoday.com/.
The Foundation for Angelman Syndrome Therapeutics (FAST) at http://cureangelman.net/ is a fundraising organization whose mission is to fund a cure for Angelman syndrome. They have a Facebook page at https://www.facebook.com/www.cureangelman.org that allows families to post questions in an open forum and facilitates interaction with organizations and other families coping with Angelman syndrome.
