The BDFA is the only patient organisation in the UK for families affected by Batten disease, a rare and terminal neurodegenerative condition that affects children and young adults, providing holistic family support and advocacy, raising awareness and promoting research into therapies and treatments.
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Beneficiaries
Batten disease is a rare and terminal neurodegenerative condition that affects children and young adults. It is a devastating diagnosis, impacting the whole family. BDFA receives no statutory funding and continuously needs to raise funds for our core operations so that our team can continue their vital work in supporting families with the many challenges they face, advocating for families and raising awareness amongst healthcare professionals and policy makers.
We advocate for families across health, education & social care. We run and commission projects to reduce isolation, support mental health and provide practical and financial support to families. We are committed to raising awareness, educating professionals and influencing policy makers to improve patient care pathways, ensuring that families have access to the services they need. We rely on our incredible fundraisers, donors, grants & campaigns like this one to ensure our work is sustainable.
