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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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Orphan Drug Designation By The European Medicines Authority

A great and much needed step forward for Batten disease, orphan drug designation by the European Medicines Authority, provides incentives for companies to conduct research into rare diseases lets hope accessible clinical trials will follow: To qualify for orphan designation,…

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Family Conference 2016

After our amazing Family Conference last weekend. We have posted the photos taken over the weekend on out facebook page for you to see and share! We will have our video up very soon!

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Research Project At The Evelina London Children’s Hospital

An Exploration of Perceived Quality of Life in Families and Carers of Children with Batten Disease at Different Stages of the Condition We would like to inform you about a research project that is being run at the Evelina London…

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A New Challenge For Professor Jonathan Cooper

Long-time Batten disease researcher and BDFA Scientific Advisor Professor Jonathan Cooper is leaving King’s College London this summer to take up a new post at the Harbor UCLA Medical Center in Los Angeles. As in London, Jon will continue to…

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