About the Batten Disease Family Association CIO
The Batten Disease Family Association CIO was formed in 1998 and became a registered unincorporated charity in 2001. In 2024 we successfully completed the transition to a Charitable Incorporated Organisation (CIO) taking the BDFA into a more sustainable future.
Our Mission
The BDFA’s mission is to enable children and adults who are affected by Batten disease to live life to the full and to provide families with the care and support they need so that they do not walk this path alone.
The BDFA offers informed guidance and support to families and the professionals who work with them, as well as actively raising awareness, and promoting research into the management of Batten disease to improve patient care pathways and ultimately find a cure.
Our Values
- Commitment
We are committed to supporting every UK family with Batten disease and being with them throughout the life-long journey. We are committed to finding a cure, to speaking to stakeholders and to representing the Batten disease community. - Knowledge
We understand the journey with Batten disease and what families want and need. We recognise how life and society changes and are committed to both pushing for innovation and to researching and sharing our knowledge and skills. - Integrity
We are with every child and every family with Batten disease in the UK and hold their legacies in our work. - Courage
We enable resilience in facing the importance of our task. Through community, we are brave when it is hard to be.
BDFA were pleased to be one of the charities that consulted on the first ever NICE Quality Standard to improve care for people with rare diseases. Setting out clear expectations for improving the diagnosis, management and treatment of rare conditions across England and Wales, the Quality Standard outlines eight priority areas for improvement.
Click the link to find out more- https://www.nice.org.uk/guidance/qs214