General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
2019-01-30 16.03.06

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.

Lord Ian Botham speaking about Batten disease, the work of the Batten Disease Family Association and raising awareness

Latest News

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William’s Story

“We have enough worry to deal with daily. Constant battles are exhausting and so unnecessary” William is 18 and has CLN3. His mother, Maria Minns, talks about how she has…

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Sheyne & Amber’s Story

Sheyne & Amber’s Story

“On a day to day basis we don’t think or talk about Batten disease unless we need to. We don’t let it rule our lives.” Chantelle Cammack, mother of Sheyne,…

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International Batten Disease Awareness Day

June 9th 2021

Find out more HERE

Support the BDFA on AmazonSmile

Do you support the BDFA on Amazon Smile?  Its so easy and at no cost to you.

Here is how:

Shop at smile.amazon.co.uk, select your chosen charity and we’ll donate to your favourite charitable organisation, at no cost to you.

AmazonSmile is also available in the Amazon Shopping App to all AmazonSmile customers using supported Android devices.

Click on the link to the right and support us while you shop.

Thanks!

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Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

All donations help us to provide the best support we can to families affected by Batten Disease.

Please do leave us a note about the donation or fundraising so we know what you have been

doing to support us and who to thank.

Thank you for your support.