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EDS & Hypermobility

Maine Resources

Sean Stanhope, DO - Central Maine Healthcare - A rheumatologist in Lewiston, ME. This may be a good resource to investigate for obtaining a diagnosis of EDS, or for continuing care.

Brendan McCann, DC, PSP - A Hypermobility and Ehlers-Danlos Syndrome aware chiropractic doctor that practices out of Maine, with licenses for Maine & NH. He has a bunch of good information on his website regarding different supplements you can take to help your EDS.

Ehlers-Danlos Society | Provider Directory - A list of Maine based providers maintained by the Ehlers-Danlos Society.

National Resources

The Ehlers-Danlos syndromes (EDS) GP Toolkit - This is a UK resource for Ehlers-Danlos Syndrome, but it has wonderful information for primary care doctors to support their patients with EDS better.

Inspire Forums | Ehlers-Danlos Syndromes & Hypermobility Spectrum Disorders - You’ll need to create an account & log in with Inspire to interact with the content on the website, but offers a great online support group style of community forum. The community page shared above is for people with EDS and Hypermobile Spectrum Disorders. There are communities for all kinds of conditions. Create a free account to access a whole website of potentially useful information.

Invitae - A remote, low cost, genetic testing service that allows patients and providers a convenient way to access genetic information using their provided tools. This is a good resource for people that are looking to get genetic testing and cannot be seen in a traditional genetics clinic. Invitae accepts most insurance companies, including Medicare & Medicaid. They also offer payment plans, a prompt payment discount, and a patient assistance program that offers a sliding-scale based fee.

The Ehlers Danlos Society - The EDS Society is an “international nonprofit organization dedicated to patient support, scientific research, advocacy, and increasing awareness for the Ehlers–Danlos syndromes and hypermobility spectrum disorder.” Their website has a lot of good information on general resource information, making social and medical connections, medical research information, and support group connections.

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