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 →

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 →

10 Reasons to go to our Family Conference

We could list way more than 10 reasons why you should join us in Liverpool this August. But, this list will get you started. 10. Be inspired or be inspiring. 9. Meet the Ring20 Research and Continue Reading →

New ways to support us while you shop!

We are pleased to announce that PayPal has added us to their list of Charities you can donate too while using their PayPal mobile app.  If this is new to you click here to find out more:  https://w Continue Reading →

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 →

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 →
Young Epilepsy Award Nomination Certificate

Young Epilepsy Champions Award Nomination

One of our Trustee's, Allison Watson, was surprised and delighted to find she had been nominated for a Young Epilepsy Champions Award. Whilst she didn't make the short-list, we are very proud that he Continue Reading →
Findacure logo

Findacure’s 2015 Peer Mentoring Programme

In this video, our very own Allison Watson shares her presentation from Findacure's 2015 Peer Mentoring pilot programme. [su_youtube url="https://www.youtube.com/watch?v=mHgCs8sfZpc" height="400" Continue Reading →