Family Support Groups

Learning that your child has a rare disease can be overwhelming and can make you feel isolated.  We are here to tell you that, yes, it can be overwhelming.  But you’re not alone.  We have compiled a list of community websites.  While they’re aren’t many, they are powerful.

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Both sites have links to their Facebook communities where families share all things unique to our experience. The insight this community shares is remarkable and life-changing.