The BDFA are very proud to be part of this initiative to raise the profile of rare disease with the medical student and education community. Please share with anyone you think may be interested. This meeting aims to encourage medical…
A description of the groundbreaking work of Dr Sara Mole and her team at UCL. Work that we have had the opportunity to support through funding. Research at UCL into the genetics of Batten Disease has had a global impact…
A powerful animation created for Together for Short Lives by video marketing agency Hurricane Media is released today. The short film, We’re having a baby was produced pro bono for the UK children’s palliative care charity, using real life stories…
Recently the Harrison family appeared on ITV 1's This Morning as part of the Text Santa appeal. One of the charities supported is Together for Short Lives. As well as raising much needed awareness for them, it was also great to…
We are delighted to announce that thanks to every one of you who has run through mud, swam Scottish Lochs, cycled the length of the country, drunk coffee, walked, ate cake, had hair cuts and everything else in between to…
The BDFA Family Conference is over for another year. Lots of families, children and professionals attended. Once we have had chance to re group, we shall have a full review of the weekend. You can see more pictures on our Facebook…
Evelina London are looking to collect information from your child’s medical records as well as the results of any tests that your child may have had, and we may also ask your permission for researchers to use existing samples of…
The BDFA is pleased to announce a RFP for UK researchers for CLN5 disease. Battle Batten on behalf of the BDFA has raised £20,000 and we invite interested researchers to submit an application by 31st October 2014. Download Guidelines and…
We are very pleased to invite you to attend the 2014 BDFA Family Networking Weekend and AGM which will be held on: Saturday 8th and Sunday 9th November 2014 from 10.30am – 4.00pm at RNIB Pears Centre, Wheelwright Lane, Ash Green,…
Batten disease is the most common inherited neurodegenerative disease of children and young adults in the UK. It develops in a healthy child, and causes progressive deterioration and loss of vision as well as epilepsy and a gradual decline…