Batten Disease Family Association

Batten disease is a rare and terminal neurodegenerative disease, which affects children and young adults. It is a fast progressing condition, and children lose their sight, their ability to walk, talk and swallow, as well as developing drug-resistant epilepsy and childhood dementia.

Our 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 Batten Disease Family Association (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.

Web: www.bdfa-uk.org.uk
Call: 07511821181 07511821181
Email: fundraising@bdfa-uk.org.uk