August 30, 2012
My son was diagnosed with Alagille Syndrome in 2009. The lists of facts and figures on the internet was terrifying. I could only find one charity specifically dedicated to ALGS, but it was based in the USA and I am from the UK. I was desperate for up to date information so I dropped them a line to see if they could send me some. I was pleasantly surprised to learn that their service extends world wide. I receive regular newsletters, I am able to access their message boards, I freely chat with people all over the world on facebook and have made some of the best friends I have. Most of whom I shall never meet, but who the alliance has united. Dealing with a rare disease can make you feel isolated, uninformed and helpless. The Alagille Syndrome Alliance provides facts, support, research grants and anything else they can think of to ease the lives of those connected to this disease, with a view to one day eradicating it completely. I will be forever grateful.
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MY ROLE:Client Served