We recently launched a short survey across our r(20) member families, to find out a little about their diagnosis, seizures and whether they have tried any form of medicinal cannabis treatment. Read the results of our survey.
Are you based in the UK? Have you been furloughed as a result of COVID-19? Do you have some spare time and skills that you could put to good use to help us maintain our vital patient support group services?
Read our latest Newsletter jam-packed with information on our research projects and other activities. Printed copies have been posted to all members and supporters on our mailing list.
Your latest newsletter from Ring20, jam packed with updates on our projects and activites.
We find ourselves in very exceptional times. Some of you have asked if there is any particular advice for you around COVID-19 and epilepsy.
The Festival of Genomics started in 2016 and, now in its fifth year, the Business Design Centre in London hosted over 100 Speakers, 50 Exhibitors and 1,800 attendees on 29th / 30th January for its latest incarnation.
Dave our newest volunteer and Allison are attending a ‘Think Research!’ event in March organised by NIHR.
At the end of 2019 Findacure in conjunction with Medics 4 Rare Diseases (M4RD) launched their annual Student Voice essay competition.
As you are probably already aware, following on from our workshop on 23 November we are now looking for our own character to symbolise us.We are incredibly excited to be collaborating with Rossie Stone, founder of Dekko Comics who is working with us on our patient information booklet.
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 research study at a British scientific meeting on r(20).
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.
Allison was interviewed by BBC news reporter Richard Westcott on 23rd Sept 19 whilst attending the CRDN RAREsummit19 at the Wellcome Genome Campus. Watch the interview here:
