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Angioma Alliance
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It's curious how days go. Almost as I finished writing about my
fun and games with Phoenix I got a mail from Beth saying she had come across this article in Wikipedia
on cavernous angioma. It's one of those in my brain stem that starting off all these fun and games.
The web page itself didn't really tell me any I didn't already know but one of the links off that page cheered me up immensely. There now exists an organisation called the Angioma Alliance, a
non-profit international voluntary health organization created by people affected by cavernous angioma [to] improve the quality of life for those affected by cerebral cavernous malformations through education, support, and promotion of research.
"Cool!" I thought, "just a shame they're in the US". And then I spotted to the link to UK Resources! There's a UK group too. Still it its early days, it was only formed in February, and as ever I realise that I got off really lightly with my bleed when I read of other people's experiences on that page.
I will be getting in touch with them shortly.
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