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Angela Sanders avatar

Lance-Adams Syndrome aka Chronic Post Hypoxic Myoclonus

Brain & Nervous System | Last Active: May 8 12:56pm | Replies (17)
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Profile picture for John, Volunteer Mentor @johnbishop

Welcome @eadwar and @amandajbla, I'm happy to see that you have connected with @angelasanders, @nadinehunger and others. I thought I would share the Lance-Adams Syndrome Facebook group link mentioned by @angelasanders as a resource for more information and support - https://www.facebook.com/groups/1487478998135615.

Thanks to each of you for sharing your experience and resources to help others with this rare condition.

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Replies to "Welcome @eadwar and @amandajbla, I'm happy to see that you have connected with @angelasanders, @nadinehunger and..."
Angela Sanders | @angelasanders | Mar 31 8:24am

Thank you John, for posting the Facebook link, I don’t know why I didn’t even consider doing that..

Would you have any information on HOW to get the attention of a provider, group of providers, research team, ANYONE who would take interest in this condition… with it being so rare there is almost no information/research..but since my daughters RCA two years ago there have been dozens of others that have followed her…it’s clearly becoming less rare…these patients and families need help.

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