Social Media 

After diagnosis the biggest challenge is usually coping with the sense of isolation and a lack of first-hand shared experience. It can be extremely helpful and comforting for families to read about and/or share stories, challenges and relevant information, online in safe groups. One can almost instantly receive support, practical advice or just a sympathetic ear. Families may not have a local support group where they can connect to someone who is going through the same thing – but online they will find many people who they can share common experiences with.

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As the opportunity for building strong communities through social media becomes more evident, large global communities for rare diseases are growing rapidly - for families, patients, specialists, researchers, and advocates. ​The Angelman Network has an official FB PAGE here.

 

Join our Private Support Groups​

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• The Angelman Network - Join our informal international chat group where we share ideas and discuss issues relevant to AS

• NZ Angel-mums - If you are a New Zealand mum/full-time carer/guardian, please ask to join our closed group where more private matters specific to New Zealanders are regularly discussed.

• Angelman Syndrome NZ – a closed group for extended NZ families and friends, supporters and professionals​

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Private Angelman syndrome FB groups (international):

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• Manual for AS Beginners – for newly diagnosed families

• Angelman Connections – the largest general group for families from all around the world

• Angelman Syndrome Seizure Information group – for sharing information on seizures, AEDs, CBD oil, diet management, etc.

• Shaking Angels - for those affected by Tremors/Myoclonus 

• Ketogenic Diet for Angelman Syndrome & Neuro Genetic Disorders

• Angelman Syndrome & Alternative Health Approach

• Angelman Syndrome Research & Trials – global group for parents, researchers, scientists, specialists, etc.

• Orthopedic issues related to Angelman Syndrome - for musculoskeleton issues and surgeries

• GI issues in Angelman syndrome - for gastrointestinal issues

• Angelman Syndrome Tube Feeding Group

• Angelman, Literacy, and Education (including Alphabet Therapy) 

• PODD & Angelman Syndrome

• AAC Through Motivate, Model, Move Out Of The Way

• Angelman Adults - International group for parents of children over 16 years

 

Other Angelman-related Official Facebook Pages​

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• Global Angelman Syndrome Registry

• International Angelman Day - our annual Angelman Day celebration plus international updates related to AS

• Angelman Academy - for AAC and Communication