Thanks to a grant from the Child Neurology Foundation, the ASF has created a Healthcare Transition of Care Toolkit. This tool will help empower parents and caregivers and guide providers through the conversations necessary to transition a loved one with Angelman syndrome to adult medical care.
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Fifty parents / caregivers of or healthcare providers treating a person with Angelman syndrome aged 12-30 years old will participate. Participants will be compensated with a $25 Gift Card for their participation that will be sent after the focus groups are completed. Â
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Tuesday, July 29
Noon EST or 7pm EST
Sign-up is now closed. Sign up was accepted on a first come first serve basis up to 50 participants.Â
Our team will reach out before July 29th with Zoom meeting details.
What to Expect
During the focus group, participants will be introduced to the Healthcare Transition of Care Toolkit and the resources it provides for both caregivers and providers.Â
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A post-survey and discussion will help us assess potential impact and collect feedback for the final version of this resource before disseminating it publicly.
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Questions
Send to development@angelman.org.