Day 1 of our Family Conference has finished. Seeing the families getting the chance to talk to each other and also to the professionals is exactly the point of the weekend. We have had research updates, family groups, activities for…
Our latest Newsletter is available to read and download. Click here to read it.
As many of you know our annual family conference will be in Coventry at the RNIB centre on the 8-9th November. We are really looking forward to welcoming so many of you but if you are unable to attend we…
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,…
Kidz Scotland Thursday, 11th September 2014 - 9.30am - 4.30pm Royal Highland Exhibition Centre, Edinburgh, EH28 8NB Visitor's FREE entry tickets are available! Disabled Living (one of the North West's oldest disability charities) is delighted to bring the Kidz events…
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…
BioMarin would like to announce that Great Ormond Street Hospital (GOSH) in London will be joining the European clinical study centres participating in the BioMarin BMN190 trial in the immediate future. At the time when GOSH initiates the study, the…
Batten Disease Family Association welcomes Neurological Alliance’s five calls to action for prioritising neurological services The Neurological Alliance has today launched a new report, Going the distance: National calls to action to drive neurological service improvement in England, taking a…