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Family Conference 2016 Information

We are pleased to invite you to the 2016 BDFA Family Conference which will be held on: Friday 18th - Sunday 20th November 2016 from 9.30am – 4.00pm at the Holiday Inn Bridgefoot Quay, Warwick Road, Stratford-upon-Avon CV37 6YR There…

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Spring Newsletter & Bulletin 2016

Click to download or read the latest BDFA Spring Newsletter & Bulletin BDFA Spring Newsletter BDFA Spring Bulletin

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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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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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James & Family Visit 10 Downing Street

Monday evening James and his family were honoured to speak at an event at 10 Downing Street about the families experiences. James has Infantile Batten Disease, and together with Together for short lives, they attended 10 Downing Street and met with…

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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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Clinical Nurse Specialist

The BDFA funded Clinical Nurse Specialist Katie Hanson has left her post as Batten CNS at Great Ormond Street Children's Hospital. She can still be contacted, if needed by families, until a new Clinical Nurse Specialist for Batten disease is…

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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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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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UCL School Of Pharmacy Study

UCL School of Pharmacy is carrying out a study to investigate the views of parents and carers about administering medicines to children via the rectal route. The survey will ask some demographic and background information before presenting three scenarios, where…

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