The BDFA is the only patient organisation in the UK supporting families affected by Batten disease, an ultra-rare & terminal neurodegenerative condition that causes profound disability in children & young adults - providing holistic family support, advocacy, raising awareness & promoting research.
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Batten disease is a group of genetic disorders that cause waste material to build up in brain cells, leading to progressive loss of speech, mobility, vision, cognition, & ultimately cell death. Cherished milestones are gradually reversed; independence disappears & the future families imagined is stolen. Many children will die between the ages of 6-12. The emotional, practical & medical impact is overwhelming. Families describe the day of diagnosis as the moment their lives changed forever.
As the sole UK organisation specialising in support for Batten disease, we currently support almost all known families affected by the disease nationwide. We advocate for families across health, education & social care. We lead projects that reduce isolation, support mental health & provide practical/financial support. We are committed to raising awareness, educating professionals & influencing policy makers to improve patient care pathways, so all families can access the services they need.
