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!
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…
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…
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…
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…
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…
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…
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,…
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…
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…