General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  

A key aim of the BDFA is to seek to promote excellence in supporting affected UK families and continuing to educate the professionals around them. Please let your care professionals know about the BDFA and the support we can offer them through putting them in touch with other professionals to share their Batten’s expertise, training days and networking opportunities.

Barbara Cole, BDFA Education Liaison Link, 01932 858828,

Laura Lee, Clinical Nurse Specialist, Batten Disease, 020 7829 8721


Medical Advisors to the BDFA

Dr Christine Caren, 01635 298943,

Dr Paul Gissen, Wellcome Trust Senior Research Fellow in Clinical Sciences and Consultant in Paediatric Metabolic Medicine, Great Ormond Street Hospital, 0207 813 8331,

Dr Barbara Csanyi, Great Ormond Street Hospital, currently on maternity leave.


Scientific Advisors to BDFA

Professor Sara Mole, Professor of Molecular Cell Biology, MRC Laboratory for Molecular Cell Biology, UCL University College London, 0207 679 7257,

Professor Jon Cooper, Los Angeles Biomedical Research Institute + 44 (424) 571 7754 or

Dr. Brenda Williams, Senior Lecturer, Institute of Psychiatry, Psychology & Neuroscience, Kings College London, 020 7848 0097

Dr. Emyr Lloyd-Evans, Senior lecturer, School of Biosciences, Cardiff University, 02920 874304 Lloyd –

Dr. Sander Smith, Principal Research Associate, Department of Genetics, UCL Institute of Ophthalmology, 020 7608 6975

Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.


All donations help us to provide the best support we can to families affected by Batten Disease.


Thank you for your support.