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

The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure.

The BDFA offers informed guidance and supports families and 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. 

The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.

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

Latest News

New Date For AGM

New date for AGM

UPDATE NEW DATE of Annual General Meeting of the Batten Disease Family Association Notice is hereby given that the 2021 Annual General Meeting of the Batten Disease Family Association to…

read more

Latest News

BDFA AGM Postponed

BDFA AGM Postponed

Dear all, Due to unforeseen circumstances, we have had to postpone our AGM that was being held on June 24th 2022. We are working on arranging a new date for…

read more
Blanie’s Story

Blanie’s Story

“In my heart I know it was her time and asked to take my girl home… Bee taught us so much during our time together and those lessons will be…

read more
Matthew’s Story

Matthew’s Story

“I would describe myself as very hands on dad and I love being able to look after Nicole and Jessica and their big brother Louis who is amazing.” Matthew Rich…

read more
Rebecca’s Story

Rebecca’s story

“Even when children seemed to be ‘locked-in,’ music could find a way in.” Rebecca Atkinson, researcher at the University of Brighton and Director of Chiltern Music Therapy tells how music…

read more
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!

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.