Sunday, February 28, 2010
Rare Disease Day 2010 Part 2: Cockayne Syndrome and Amy and Friends
This is the second of a two part posting to mark Rare Disease Day 2010. You can read part 1 here.
Last year I spoke to Jayne Hughes, the wonderful founder of the charity Amy and Friends and wrote this posting on here.
Amy and Friends is a great example of what can happen to further research, understanding and support of a rare condition when there's an organisation trying to bring all of these things together. As Jayne herself says, when Amy was diagnosed, she had nobody to turn to. At least now, the NHS in England will give details of Amy and Friends to the family of anyone who's diagnosed with the condition.
Jayne wants specialists and charities in Scotland to be aware of Amy and Friends and the work they do in organising retreats and supporting families and again that's something that I've asked MSPs to raise awareness about ahead of the event in the Scottish Parliament on Tuesday evening.