General: 07354 486586    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
2015 BDFA Family Networking Weekend And AGM

Dear Members and Supporters, We are pleased to invite you to the 2015 BDFA Family Networking Weekend and AGM which will be held on: Saturday 17th and Sunday 18th October 2015 from 10.30am – 4.00pm at the Village Hotel  -…

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The BDFA Welcomes The Recent Announcement By PlasmaTech Biopharmaceuticals, Inc.

The BDFA welcomes the recent announcement by PlasmaTech Biopharmaceuticals, Inc. Professor Kielian and the UNeMed Corporation (the technology transfer and commercialization office (TTO) for the University of Nebraska Medical Center) are to be congratulated for their hard work and vision…

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Awareness Day – June 5th 2015

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…

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Cancellation Of Lab Open Day (18 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…

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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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