Forums & Support Groups

A group of researchers in Canada are looking at the link between EDS, MCAD, POTS and ME and call themselves the Elephant Project.  Their patients have an associated Yahoo Group which discusses all these conditions here.

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Ehlers-Danlos Syndrome:

The Hypermobility Syndrome Association UK.  This national support group focuses mainly on Hypermobility Syndrome, but also covers EDS & Marfans Syndrome.  They have a very good Forum which you can browse without being a Member, though you have to join if you wish to post and a regularly updated Facebook page.

Ehlers-Danlos Support UK support people specifically with EDS in all its forms.  They have a Forum, though I can’t comment on how useful it is as I’m not a member (though I am a member of the support group and receive their newsletter) and a really good Facebook page.

Ehlers-Danlos National Foundation USA is an American based organisation who supports people with Ehlers Danlos Syndrome.  The web-site contains some excellent information…….if you know how to find it!  Maybe it’s just me, but I find this website terribly confusing and difficult to navigate.  There is an associated Forum over at Inspire with excellent patient support and information.  The only downside is that it’s USA-focused and of course the health-care and welfare systems abroad are totally different to ours in the UK.

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Mast Cell Disease/Histamine:

There is a UK support group for anyone with Mast Cell Disease here.  A yearly subscription fee applies.

There is a closed Facebook group for people with MCAD in the UK here.

There is a closed Facebook group for people with MCAD and related conditions like EDS and POTS here.

The Mastocytosis Society of Canada has some good, easy to read and understand information on mast cell disorders.

Although not specific to Mast Cell Disease, there is a very large and active mast cell population on the Inspire’s Rare & Genetic Diseases online forum.  Mostly American, but there are UK participants as well as sufferers from other countries.  A really good source of patient support and info.

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M.E.:

The ME Association, the UK’s leading ME charity, has a very active Facebook page which doesn’t contain the usual arguments and flaming often found on other online ME groups.

The 25% ME Group is the only dedicated ME charity worldwide to focus solely on those severely affected and bed/housebound.  They have a Facebook group – please contact the charity to ask to be included.

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