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 and graduation in nutritional science and over 15 years of involvement in r(20)  I get to showcase a pilot

0 comments
IMG_4838

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 showcasing our latest poster on our Ring20 stand, to presenting to a packed auditorium of 250 people, to the numerous leads

0 comments
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 forms part of EpiCARE, the European Reference Network (ERN) for rare and complex epilepsies. Find out a little more about who’s

0 comments
Dan

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 very close to our family’s heart as my nephew James suffers from the rare Ring

0 comments
skydive2019_4

Mother and Daughter Flying High for Ring20

There might be many things on a young girls wish-list as she approaches her sixteenth birthday, but what Jacqueline Ball didn’t expect was for her daughter Sophie to say she wanted to jump out of a plane. This is exactly what Sophie wanted and her motivation was to show support for close

0 comments
See our previous posts here.