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| A supportive, informative, networking organisation for the families, carers and professionals giving care to children and adults with battens disease |
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- Consultant Paediatric Neurologist and Medical Advisor to the BDFA
- Liaison for Juvenile Batten Disease Nursing Care – SeeAbility
- Educational Advisor to the BDFA
- Social Care Advisor to the BDFA
- Reader in Experimental Neuropathology, KCL - Scientific Advisor to the BDFA
- Reader in Molecular Cell Biology, UCL - Scientific Advisor to the BDFA NCL Resource is maintained by Dr Mole at http://www.ucl.ac.uk/ncl
- Senior Lecturer in Molecular Genetics, UCL ICH
- Medical Sociologist and Lecturer in Sociology, KCL
BDFA Batten Disease Professional Development Group The Batten Disease Professional Development Group was founded in 2005 by Ruth Williams and Sarah Kenrick. The group aim to promote excellence in multidisciplinary and interagency working, and share the knowledge, experience and skills in the management and care of children, young adults and their families affected by Batten Disease. This is a key resource for professionals, and is supported by and administered through the BDFA as we seek to promote excellence in supporting affected UK families and continuing to educate the professionals around them. Our endeavours are kindly supported by SeeAbility and Guy's and St Thomas' NHS Foundation Trust in providing facilities and staff resources to enable all this to happen. Do 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, the group’s training days and growing e-forum to keep them posted on forthcoming activities. For details on current days see our forthcoming events section.
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