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Help us spread the word!

As you know this Charity is all about supporting and raising awareness for those with the very rare R(20) diagnosis. We have been delighted with the line up of experts and speakers who have agreed to Continue Reading →
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BPSU – Rare Disease Conference 2017

One of our amazing volunteers, Dawn, agreed to represent us as the Rare Disease Conference at Birmingham Children's Hospital and did a fantastic job manning a stall. The event was focusing on c Continue Reading →
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Jeans for Genes Day Grant

As you know in June we found out that we were eligible for a grant from this year's Jeans for Genes day. Receipt of the full grant would be subject to Jeans for Genes meeting their overall fundr Continue Reading →
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Cambridge International Rare Disease Summit 2016

Thought provoking day of speakers at Robinson college, Cambridge#crdn2016. The introduction from new chair of CRDN Alistair Kent OBE was followed by a panel of 'Powerful Voices' where patient organ Continue Reading →