Andersen-tawil syndrome
Organizations
Are there good support groups for Andersen-Tawil Syndrome?
- Periodic Paralysis Association www.periodicparalysis.org
- Periodic Paralysis International www.hkpp.org
- Sudden Arrhythmia Death Syndromes Foundation www.sads.org
- Andersen tawil syndrome Facebook Page https://www.facebook.com/AndersenTawilSyndrome
- Patients Like Me
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Where do I find other people with Andersen-Tawil Syndrome?
Where do I find other people with Andersen-Tawil Syndrome?
The Periodic Paralysis Association (www.periodicparalysis.org) has a discussion board that may be helpful in finding other people who experience the periods of muscle weakness (periodic paralysis) that are characteristic of Andersen-Tawil syndrome.
Also, Karen Carr Beihl runs a Facebook page and private Facebook group for those with Andersen tawil syndrome.
Andersen-Tawil syndrome is also listed on Patients Like Me.
