The survey example slide above shows a segment of one of the typical responses we received and the group pictures from the workshop.

PLRH research study

First Ring20 Research Project Publishing at BPNA Meeting, Jan 2019 A Personal Journey by Donald Gordon, Ring 20 Research Support UK CIO Chair & Trustee Finally after 5 long years of study a Continue Reading →
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CRDN RAREsummit19

Its been and exhausting but exhilarating week, the highlight being attending RAREsummit19 at the Wellcome Genome Campus organised by the Cambridge Rare Disease Network on Monday 23rd Sept 19. From Continue Reading →
EPAG EpiCARE AGM 2019

Introducing Patient Advocacy across Europe

Allison's written a short introductory piece for the latest International Bureau for Epilepsy (IBE) quartely newsletter on behalf of the European Patient Advocacy Group (EPAG) that she co-chairs which Continue Reading →
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Dan’s amazing challenges

This is Daniel from Wales who is currently supporting Ring20 Research and Support UK CIO: “I am trying to help raise awareness and fundraising for Ring 20 Research & Support UK. It is a charity Continue Reading →
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Mother and Daughter Flying High for Ring20

[caption id="attachment_2059" align="alignleft" width="190"] Sophie[/caption] There might be many things on a young girls wish-list as she approaches her sixteenth birthday, but what Jacqueline Bal Continue Reading →
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A week in the life…

Many people ask me why I volunteer and why I do what I do. If I reflect on my answer to them it’s primarily because I enjoy my voluntary work and find it incredibly rewarding; there’s a lot of job Continue Reading →
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Mental Health Awareness Week

When you meet Torie the first thing you notice is her sheer radiance and beaming smile. You cannot help but feel uplifted by her positive energy, but like many people who live with epilepsy, her smile Continue Reading →
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4th ERN conference, Brussels 21-22 Nov 2018

[gallery ids="1905,1909"] As part of my role as a European patient advocate for rare epilepsies, last month I was honoured to be invited to attend the 4th European Reference Networks Conference alo Continue Reading →
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Patient Perspectives on Rare Disease

Glad Jackie and I made it to the The Rare Disease Day Event at Birmingham Children's Hospital on 1st March 2018. Gosh it was cold! A great day which got cut short due to the weather. I met Continue Reading →
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CRDN Summit 2017

On 23rd Oct, Dawn and Allison had the fantastic opportunity to attend the Cambridge Rare Disease Network (CRDN) Summit 2017 at Robinson College, Cambridge. On arrival we handed over our patient jou Continue Reading →