Social media 

Popular social media sites such as Facebook, Twitter, Pinterest, Blogs, YouTube, etc. have become a lifeline for those who live with rare conditions such as Angelman syndrome.

Social media has made it possible to create vibrant, active platforms that are used very effectively by all Angelman syndrome support organisations around the world including supporters, researchers and specialists.

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Find us on Facebook

Join our Online Support Groups

  • 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

 

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.

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. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

International Angelman syndrome FB groups:

 

Other Angelman-related Official Facebook Pages

Social media platforms are now being used to:

  • Connect families around the world

  • Raise global awareness for Angelman syndrome/all rare conditions

  • Share new research information

  • Encourage open discussion forums for new therapeutics

  • Gather specific data and information

  • Advocate for treatments

  • Fundraise effectively

  • Help find participants for trials

          and much more….

The Angelman Network is a

Registered Charitable Trust based in New Zealand

CC46746.

Disclaimer: Links to other Internet sites are for the convenience of all web-users. The Angelman Network is not responsible for the availability or content of these external sites and we do not endorse, warrant or guarantee any products, services or information that may be offered at these sites. Always contact your own medical practitioner for any medical advice.

©2018 by The Angelman Network.