Our Mission
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 cure.
Our Plans
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
BATCure Online Survey
The BATCure Family Survey is now live! The BATCure survey is now available to complete online and if you are a parent/carer of an affected child, young person or adult…
Genetic Alliance Survey on Insurance
Help us produce the insurance information you need! Accessing appropriate insurance can be a significant problem for many patients and families affected by genetic conditions. Patients and families affected by…
Brineura – Update
Despite the hopeful news of a European licence for Brineura - the new and only treatment for children diagnosed with CLN2 (Late Infantile Batten disease) - NHS England has now…
Starlight Ball 2017 – Thank You
On a beautiful June evening we were lucky enough to host our very first Starlight Ball. It happened to be held on awareness day. We were thrilled to see so many…
