Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures.
a. Employ a full-time support and advocacy worker
b. Operate a Freephone helpline
c. Commission the first Batten disease Clinical Nurse Specialist in the UK
d. Operate a small grant scheme to help meet the needs of caring for a child or young person living with Batten disease.
e. Increase our research funding in the UK and worldwide into potential therapies and ultimately a cure.
Latest News
Katie’s Fundraising Story
Katie’s Fundraising Story My family has recently found out devastating news that my amazing nephew has a terminal disease, CLN6 Battens disease, which will progressively take his vision, motor and…
Notice of Annual General Meeting of the Batten Disease Family Association 2020
Notice of Annual General Meeting of the Batten Disease Family AssociationNOTICE IS HEREBY GIVEN that the Annual General Meeting of the Batten Disease Family Association will be held virtually via…
Save our children’s sight campaign- children with CLN2 Batten disease on Brineura
Following on from yesterday’s announcement about the restarting of our research function, the BDFA is pleased to announce our collaboration with a group of families who have children with CLN2…
BDFA RESEARCH ANNOUNCEMENT
We are writing to announce our intent to restart research activities funded by the BDFA, in collaboration with families. As you know, we had to pause this. Research is a key…
Brineura® recommended for use in Scotland
Life-changing drug for rare and fatal form of childhood dementia made available in Scotland for the first time Today, the Scottish Medicines Consortium has recommended the use of Brineura® (cerliponase alfa)…
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