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Registration For NCL 2018 Is NOW OPEN!

Registration for NCL 2018 is now open on the conference website: http://www.ncllondon2018.com Please contact conference organisers Bioscientifica who can provide details of discounted rates for families: ncl2018@bioscientifica.com

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NICE Say NO To The Use Of Cerliponase Alfa For Children With CLN2 (Late Infantile Batten Disease)

NICE say NO to the use of Cerliponase Alfa for children with CLN2 (Late Infantile Batten disease) BDFA Summary of NICE Decision NICE ECD Report SIGN THE PETITION HERE This decision means that children diagnosed with this devastating disease in…

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The Juvenile Neuronal Ceroid Lipofuscinosis And  Education Project (2014 – 2017)

Click here to download the Paper This paper addresses some findings and experiences from the Juvenile Neuronal Ceroid Lipofuscinosis and Education Project (2014 - 2017). Juvenile Neuronal Ceroid Lipofuscinosis (JNCL) is also called CLN3 disease, Spielmeyer-Vogt Syndrome and Batten Disease.…

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Genetic Alliance Survey On Insurance

Help us produce the insurance information you need! Accessing appropriate insurance can be a significant problem for many patients and families affected by genetic conditions. Patients and families affected by genetic conditions often find it difficult or impossible to access…

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Brineura – Update

Despite the hopeful news of a European licence for Brineura - the new and only treatment for children diagnosed with CLN2 (Late Infantile Batten disease) - NHS England has now denied access to this only hope for children and families…

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Laboratory Open Day At The Royal Veterinary College

Please join us on Thursday 8th June (11.00 – 16.00) at the RVC, London, to find out more about the work of Dr Russell’s laboratory, including their work as part of the BATCure research project. Dr Russell has great expertise…

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Regulatory Approval In Europe And The USA For Brineura, First Treatment For CLN2 (Late Infantile Batten Disease)

The BDFA is delighted to announce that in the last week we have received very positive news from the European Medicines Agency (EMA) and the U.S Food and Drug Administration (FDA) on the approval of Brineura as the first treatment…

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Laboratory Open Day At Manchester Metropolitan University (MMU)

Professor Tristan McKay and the BDFA would like to invite parents and carers to a Laboratory Open Day on Thursday 30th March 2017 at MMU. The day will run from 10.30am-3.30pm with a light lunch provided.  BATCure is a 3-year research project with…

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Opportunity To Share Your Story As Part Of The Bears4Rare Campaign

Bears4Rare is an initiative from Shire which aims to bring public attention to the difficulty rare disease patients face accessing treatments.  Bears4Rare aims to unite the patient voice to highlight the universal challenges faced by people in the UK living…

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Family Conference 2017 – Save The Date

The BDFA conference will be held from 24th-26th November 2017 at the Crowne Plaza Hotel in Stratford Upon Avon. More details to follow soon. Look forward to seeing you there.

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All donations help us to provide the best support we can to families affected by Batten Disease.

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