Caring for a child or relative with a rare disorder such as Angelman syndrome can be challenging, with information hard to find about the disease or doctors who specialize in treating it.
As a result, parents and caregivers can easily feel isolated. Some may find it difficult to talk to friends or family who may not understand what they are going through.
Why join a support group?
If you’re a caregiver, it can be helpful to talk to other people who are also caregivers — people to whom you don’t have to explain your child or loved one’s illness. Support groups can offer a sense of community and belonging, and help you to find information about different treatment options.
Non-profit advocacy groups, such as the Angelman Syndrome Foundation or the Foundation for Angelman Syndrome Therapeutics, are great resources to find doctors with experience in treating Angelman syndrome, learn about new treatments being developed, and connect with other patients and families.
These groups also advocate for patients, raising awareness and educating the general public about the disease. Joining advocacy groups is a good way to find information about clinical trials and to connect patients with the organizers.
Our website also offers a wealth of information about Angelman syndrome, including new treatments in development. We regularly publish news stories about research covering different aspects of the disease. We also have a column called “Raising an Angel” written by the parent of a child with Angelman syndrome.
How do I find a support group?
Ask your doctor and treatment center for information about support groups. Check with your town or city for any groups in your area. Religious organizations may also have resources available or be able to direct you to a support group.
Caregivers can also join online groups on Facebook or Yahoo! Groups to chat with others and share news and tips.
What if there’s no support group in my area?
If you can’t find a support group in your area that suits you, start one yourself. Resources, both online and through local organizations, can help you to form and grow a new support group.
Last updated: Oct. 31, 2019
Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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