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  • #182597
    Andersen–Tawil syndrome

    My sister has been diagnosed with Andersen Tawil Syndrome. Is anyone able to help with the below points please?

    – Which UK, EU, US and other associations focus on this syndrome?
    – If there are no associations or bodies solely for this specific syndrome what is the nearest organisation governing or providing information or advice?
    – What are the main treatment centres worldwide?
    – What type of medical specialists deal with this type of syndrome?
    – Are there any emerging treatments or promising drugs in the pipeline?
    – Are there any clinical trials worth considering?

    Any significant web links would be much appreciated.

    Dzhambulat
    Participant
    Posts: 0
    Joined: 03/11/2019
    #182806
    Reply To: Andersen–Tawil syndrome

    Hi,

    I have just found this Facebook support groupAndersen-tawil syndrome group

    If you don’t use Facebook there may be other sources of info. Hopefully we can signpost you in the right direction. Bear with us.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
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