Taysha Gene Therapies is planning a webinar and invites the CLN1 disease community to submit questions about the TSHA-118 CLN1 Batten disease clinical trial to the patient advocacy groups BDSRA and BDFA. Please submit your questions by February 20th, 2022 to Lisa at, admin@bdfa-uk.org.uk at…
BDFA STAFF NEWS A big welcome to Liz Jones to the BDFA family support team! Liz is a qualified Child & Family practitioner working with families for over 16 years in both voluntary and public sector. Liz has spent most…
Fancy working for the BDFA? The BDFA currently have an exciting job opening for a Scientific Officer to join the team. This is an opportunity for to join a national rare disease charity as our in house scientific ‘expert’ on…
Well the Christmas charity single made it all the way to the no 1 position in the official UK physical singles charts!! Huge congratulations and thanks to our friend and supporter David McGovern for this amazing achievement. David has worked…
Welcome to the BDFA newsletter December edition. The team has been working really hard to get the newsletters going again after a long break. We hope you enjoy the update. Wishing you all a Merry Christmas and a very happy…
Taysha Gene Therapies has announced an important milestone for the Queen’s University clinical trial for TSHA-118, a CLN1 disease clinical trial funded by Taysha Gene Therapies. Please read the community letter here http://www.bdfa-uk.org.uk/wp-content/uploads/2021/12/CLN1-CTA-Community-Letter_v3_121621_FINAL.pdf
Boris the BDFA bear has some big news! He is off on his long awaited UK tour! Like the rest of us, Boris had his holiday plans cancelled last year due to COVID so now he’s is making up for…
Wednesday 15th December, 10.30-12.30- via zoom As part of our ongoing partnership with Rett UK and Demelza This is a session for families who may have a new diagnosis and are applying for DLA for the first time, or there…
It's the first year of these very special BDFA awards, celebrating best practice across the UK among people supporting and working with our children, young people and adults with Batten Disease.All our winners and those specially commended have been nominated…
We are so excited!! The Christmas Charity single in aid of the BDFA is released on Friday 3rd December and you can order a copy on limited edition CD now! See David's link below...We can't wait! Stay The Same (Featuring…