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International Ask-An-Expert: Biotechs And NCL Clinical Research: Watch Recording Here

The BDFA was delighted to join international partner BDSRA and others for an enlightening and informative international session looking at the current research and treatment landscape for Batten disease, in the light of recent Dear Families   The BDFA was…

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Ever Wondered How Peer Befriending Helps Parents?

One parent who previously benefitted from having a Peer Befriender said…  “My Peer befriender has been an absolute lifeline. Since the diagnosis I have felt very cut off and not wanted to socialise or see anybody. It’s so helpful to…

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Training For Educators With Batten Behaviour, Adults And Transitions Specialist Sarah Kenrick

We are pleased to be offering three (free) training slots with Sarah Kenrick, this is for professionals working with children/young people and adults with CLN3. These training slots will be held over Zoom. If you feel this would be beneficial…

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Staff News- Mimi Petty, Our New Peer Befriending Coordinator

BDFA STAFF NEWS The BDFA is delighted to introduce Mimi Petty as our new Peer Befriending Coordinator. Mimi is a bereaved parent and her son Bertie passed away in 2019 from CLN1 Batten disease. Mimi is already well known to…

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CLN5 Update- Neurogene NGN-101 Now Enrolling Participants At Clinical Trial Site In University Of Rochester Medical Center In Rochester, NY, USA

Neurogene Inc., a biotech company committed to developing life-changing genetic medicines for patients and theirfamilies affected by rare neurological disorders, is excited to share an important update on their development programfor CLN5, a subtype of Neuronal Ceroid Lipofuscinosis (NCL), or…

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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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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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