Tag Archives: rare disease day

A parent’s experience of our befriending scheme

To mark Rare Disease Day 2013 we have a story of just how incredibly helpful it is to bring people affected by a rare disease together. A parent contacted our befriending scheme¬†last November. She has two children, the youngest being … Continue reading

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Posted in Parents' accounts | Tagged , , | 1 Comment

Prepare for Rare Disease Day: Wednesday 29 February 2012

Rare but strong together A rare medical condition affects less than 1 in 2000 people. Aniridia affects about 1 in 100,000 people. Even fewer have WAGR/11p deletion syndrome making it ultra-rare. But collectively people who have rare conditions are not … Continue reading

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Posted in Campaigns, Fundraising, Other agencies | Tagged , , | 1 Comment