General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
BDFA STAFF NEWS, A Warm Welcome To Elizabeth Jones

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…

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Join Our Team! The BDFA Are Looking For A Scientific Officer

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…

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BDFA Christmas Charity Single Made It All The Way To The No 1!

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…

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BDFA December 2021 Newsletter Is Here!

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…

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Important Milestone CLN1 Disease Clinical Trial Funded By Taysha Gene Therapies

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

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Boris The BDFA Bear Has Some Big News!

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…

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Disability Benefits Session With Disability Benefits Expert Lizzie MBE

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…

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PRIDE OF BATTEN WINNERS

 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…

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BDFA Christmas Charity Single 2021, Pre Order Now!

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…

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Can You Help The BDFA To Win A £1,000 Ecclesiastical Movement For Good Award?

Starting on the 6th December Ecclesiastical will be giving away ten £1,000 grants each day for twelve days, to charities that have the most nominations! This award would mean a lot to us and be a great help, as we…

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