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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 →
jeans-for-genes

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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New EURORDIS members

As of the 24th November 2016 we were approved to join the associate membership of EURORDIS. We are delighted with this news as EURORDIS represents rare diseases in 64 countries.  With over 700 dire Continue Reading →