On June 5th we would like to mark Batten Disease Awareness Day and we would love for you to help us turn the world orange! Without awareness our job of securing vital services for families and essential research into potential…
WESC Foundation - Open Day - 2nd June 2015
Professor Jon Cooper has just been informed by Kings College that his laboratory will be moving between the 15-19th June. As you are aware, this is the same week that we had planned to have the PSDL/BDFA Lab Open Day for…
Our Newsletter and Bulletin are now available for download below. Please have a read! Spring Newsletter 2015 Spring Bulletin 2015
Dreams Come True Charity are a UK national charity that fulfil dreams and wishes for children and young people aged between 2 and 21 years old. They can help with meeting an idol, visiting a special place in the UK…
Disability Living Allowance (DLA) is the main benefit to help meet the extra costs of having a disabled child. Yet when your child is in hospital for a long time DLA is taken away. Families tell us the extra costs…
Cerebra Innovation Centre may be able to help find equipment to suit your child or young persons needs. Cerebra Innovation Centre was originally set up because although some equipment is available to buy, it often doesn't look very nice or…
Ahead of the forthcoming election Rare Disease UK, Genetic Alliance UK and SWAN UK have joined forces to launch their first ever joint campaign. They have created a pledge card to ensure that whoever forms the next Government will be…
Sparks, on behalf of the Batten Disease Family Association is calling for applications researching the causes and treatments for the following forms of Neuronal Ceroid Lipofuscinoses, NCL (Batten disease) CLN1, CLN5, CLN6, CLN7 and CLN8. Read More Here If you would…
Thank you to everyone who made our office launch such a success and to each of you who support the BDFA every day in our work.