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…
We have places in a whole series of events over the next 9 months ranging from road runs, muddy runs, cycling and long walks! A lot of the events listed below have distance options; just contact us to find out…
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.
Carly and Paul Hadman set up stamp collection boxes in banks and shops across the Fens as part of an appeal to raise awareness and funds to find a cure for Late Infantile Batten Disease which their daughter Effie was…
The BDFA work closely with the Roald Dahl Marvellous Children's Charity. They have launched an exciting programme entitled ‘Precious Moments. The programme is looking at health communications and is being delivered in partnership with Contact A Family. They are calling…
Nominations have opened for the 2015 Well Child Awards. These annual awards, supported by long term partner GSK, celebrates the inspirational qualities of the UK’s seriously ill children and young people along with the dedicated health professionals who go that…
On 29th January Farnborough Freemasons from Mercury Lodge presented a cheque for £850 to Andrea West, Chief Executive Officer of the Batten Disease Family Association, to support them in all their valuable work providing help and assistance to children with…
BDFA are supporting this years Rare Disease Day on February 28th. www.rarediseaseday.org 2015 marks eight consecutive, successful years of Rare Disease Day. Continuing the momentum, Rare Disease Day 2015 puts the focus on the daily lives of patients, families and caregivers…