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A Successful Education Training Day

Our Education Training Day at Linden Lodge last Friday was a great success. It was great to be able to bring professionals together to network and to learn more about Batten disease. We packed a lot into a short space…

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PSDL Laboratory Open Day

Professor Jon Cooper and the BDFA would like to invite you to a Laboratory Open Day on Tuesday 10th May at Kings College, London. The Laboratory will be open to the public between 10:00 AM - 04:00 PM on May 10, 2016. Do…

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CLN2 Enzyme Replacement Therapy Trial

After the positive data from their CLN2 Enzyme Replacement Therapy Trial, BioMarin are looking at expanded use. We are working with BioMarin and Great Ormond Street to ensure that eligible patients have access to this. If you know any families…

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Rare Barometer Voices Survey

Rare disease patients, family members and patient representatives across Europe can now register for Rare Barometer Voices, a new interactive survey panel available in 23 languages, which collects the experiences of people that are living with or affected by a…

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BioMarin – CLN2 Enzyme Replacement Trial

At the Annual World Symposium the worldwide Batten community received some positive news from the US company BioMarin about their data from the CLN2 (Late Infantile Batten disease) enzyme replacement trial. The trial has been ongoing in sites in London,…

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Andrea Is Attending WORLDSymposium™ 2016

Andrea is very privileged to be attending Dr Tammy Kielian's talk on her pre-clinical work on gene therapy for CLN3 (Juvenile Batten Disease) and also BioMarin will present the data from the CLN2 trial for the first time. We will bring…

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EU Horizon 2020 Award To RVC

BATCure, a consortium of leading scientific research groups and companies, in which The Royal Veterinary College is a key partner, has been awarded an EU Horizon 2020 grant of approximately 6 million Euros. BATCure aims to investigate the natural history…

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Eurodis Survey

EURORDIS is conducting an internet-based survey in an effort to better understand how well patients are engaged in medical care, including the relationship with health care providers, the understanding of the therapy (its efficacy, possible difficulties, benefits as they see…

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BATCure Kick Off Meeting

The first meeting of the BATCure group took place at UCL in London on January 27-29. It was a very exciting to finally be starting on the project with over 30 scientists, research students and clinicians attending from Denmark, Germany,…

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BPSU – Rare Disease Conference 2016

Join Royal College of Pediatrics and Child Health for the BPSU's 30th anniversary Rare Diseases Conference, taking place on 23rd February 2016 at the University of Birmingham. The conference will bring together paediatricians, trainees and other healthcare workers with an…

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