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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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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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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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Genetic Alliance UK – GenomeSeqWeek

Genetic alliance UK would like to invite you to join us for our week of events exploring how genome sequencing could impact your future. For details of the events and how to book tickets, please visit their website.  

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Horizon 2020 Societal Challenge

Good news for the next step in European Research funding for Batten disease. The proposal submitted by Dr Sara Mole, UCL London, has successfully passed the first round in the European Commission funded project Horizon 2020 Societal Challenge “Health, Demographic…

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BioMarin (BMRN)

BioMarin (BMRN) Says early data from Phase 1/2 BMN190 Study Shows Stabilisation of Disease. We are all very encouraged by the work of our partners in the scientific and pharmaceutical communities and hugely grateful to the courage of those parents and…

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Royal Society Of Medicine – Students 4 Rare Diseases

The BDFA are very proud to be part of this initiative to raise the profile of rare disease with the medical student and education community. Please share with anyone you think may be interested. This meeting aims to encourage medical…

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Improving The Diagnosis And Understanding Of Batten Disease

A description of the groundbreaking work of Dr Sara Mole and her team at UCL. Work that we have had the opportunity to support through funding. Research at UCL into the genetics of Batten Disease has had a global impact…

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Together For Short Lives – Animation

A powerful animation created for Together for Short Lives by video marketing agency Hurricane Media is released today. The short film, We’re having a baby was produced pro bono for the UK children’s palliative care charity, using real life stories…

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