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BDFA Spring Newsletter & Bulletin

Our Newsletter and Bulletin are now available for download below. Please have a read! Spring Newsletter 2015 Spring Bulletin 2015

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Dreams Come True Charity

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…

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Contact A Family – Petition To Stop DLA Being Taken Away

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…

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Cerebra Innovation Centre

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…

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Pledge For Patients

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…

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Challenge Yourself For BDFA

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…

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Call For Research Proposals

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…

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BDFA Office Opens

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.

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Stamps Collected For Effie

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…

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Roald Dahl Marvellous Children’s Charity

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…

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