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10 Tips for Finding an Ehlers-Danlos Patient Advocate

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Finding a good EDS patient advocate can be like finding a needle in a haystack. But fear not, my bendy friends — I’ve got some tips to help you on your quest!

Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility is sometimes suggested to be a rare genetic disorder that affects the connective tissues of the body.

But it is not rare, affecting approximately 1 in every 500, according to scientists at MUSC at the Norris Lab. But while we wait for the medical community to get knowledgeable, we must advocate for ourselves.

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