Her mailen:
Dear Norwegian NCL Family Assocation
The BDFA Family Support Project
The Support Needs of Families of Children with Batten Disease: An Audit of the Efficacy of Existing Services and an In-depth Study of Families Needs
I attach a summary of the findings of the above project which the BDFA commissioned a medical sociologist at King's College London, Dr Sasha Scambler, in liaison with Dr Ruth Williams, a consultant paediatric neurologist at the Evelina Children's Hospital, to carry out. This project was funded through a Jeans for Genes grant. Dr Scambler was involved with the BDFA from its beginnings in 1998 and Dr Williams is our Medical Advisor and so we are delighted that they have now completed this vital research into our families' needs. This report meets our aim to have that evidence, in one document, that we can refer to and use as a tool to improve the lives of affected families. We would therefore be very grateful if you were able to include this article in some way in your next newsletter and/or website postings to help us disseminate awareness of these findings as widely as possible. Related information is on our website at http://www.bdfa-uk.org.uk/research/item02.htm
I hope this is of interest to you and I look forward to hearing from you.
With thanks and best wishes for 2009.
Jan Sablitzky
Jan Sablitzky BSc
BDFA Development Officer
0115 965 4815
bdfa.info@btinternet.com
The Batten Disease Family Association –
a supportive, informative, national networking organisation for the families, carers and professionals giving care to children and adults with Batten Disease
and for promoting awareness of, and research into, the disease
For more information on supporting our work visit www.bdfa-uk.org.ukRegistered Charity No 1084908