General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
Christmas Break

The BDFA office will be closed from 23 Dec returning on 6 Jan 2020 for the Christmas break. Thank you for all your support over the past year, it is very much appreciated. Everyone at the BDFA wishes you a…

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Dear All This is my last blog as CEO of the BDFA. It has been 19 months since I joined and my contract is ending. As I write, I have two quotes going through my mind as they have been…

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Juvenile CLN3 Disease Outreach Service (juvenile Batten Disease)

Building on the wealth of experience at their world-leading specialist residential service, Heather House, SeeAbility have launched a unique outreach service across the UK, available to all families, professionals and caregivers supporting someone with juvenile Batten disease (CLN3). Sarah Kenrick is the Outreach Liaison Nurse…

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LSD Collaborative Manifesto

As you may know, the Batten Disease Family Association is a member of the LSD Collaborative. The LSD Collaborative is a group of charities and patient organisations that support patients with Lysosomal Storage Disorders (LSD). This group works together on…

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JNCL And Education Book

We are delighted to have limited stock available of the Erasmus+ funded book on CLN3 and education. It has 34 chapters on a wide range of topics including: Perspectives on education and training Planning education, assessment and intervention for students…

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Yesterday, Wednesday 13 Nov 2019, the first infusion of Brineura was given to a child at Great Ormond Street Hospital as part of the new Managed Access Agreement between BioMarin and NHS England. The child would not have been able…

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Seeking Part-time CEO

We would like to announce that we are looking for a new part-time CEO to take the BDFA forward. The new CEO will work 30 hours a week, in line with our restructured budget. Samantha Barber is leaving the BDFA…

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NEWS!! Absolutely Delighted To Announce That Brineura Is Approved!!

Life-changing treatment on the NHS for children with rare, deadly disease We are beyond delighted to announce that Brineura has been approved. Further details to come. Families have been absolutely incredible in their strength and resilience in getting this over…

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Latest research has shown the importance of singing with Juvenile Batten Disease. Do you know someone with a diagnosis of JNCL? Would they be interested in taking part in a project about music? Who can participate? If you are the…

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Scientific Officer Update

We are very sorry to announce that our Scientific Officer, Heather Band, left the BDFA on 7th June 2019 after almost seven years with the organisation. We thank Heather for her professionalism, dedication and all her hard work on many…

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