A very worthwhile meeting yesterday to explore information sharing, which I feel will become very valuable and supportive for current and future users. As a family, tinged with 'Hughes Syndrome' including my young children, and also with two other diseases - psoriatic arthropathy and sjogroens on board, to have another avenue of awareness/support etc will hopefully also bring about some very overdue modern change in the arena of patient/GP/consultant awareness.
Hughes Syndrome - Learning and suppor... - Hughes Syndrome A...
Hughes Syndrome - Learning and support through information sharing
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MaryF
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Very good of you to come along Mary - glad you're finding your way around the site now 
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