18/08/2026
Did you know that…..?
BDFA works in partnership with national alliances and collaborative networks that are driving improvements in diagnosis, care pathways, research, and access to treatments for people living with Batten disease and other rare conditions.
Our advocacy focuses on ensuring that the needs of the Batten disease community are represented in discussions around neurology, lysosomal storage disorders (L*Ds), childhood dementia, and wider rare disease policy. We work alongside organisations including Genetic Alliance, the Neurological Alliance, the Specialist Health Care Alliance, the L*D Collaborative, the Newborn Screening Collaborative, the Patient Professional Partnership Network, and the Childhood Dementia Initiative.
By collaborating with other patient organisations, clinicians, researchers, and policymakers, we strengthen the voice of the Batten disease community and work to influence policies that improve diagnosis, access to innovative medicines and treatments, and the quality of care for individuals and families affected by Batten disease.
If you would like to learn more about BDFA’s advocacy and policy work, please contact Liz Brownnutt, CEO, [email protected]
