Easter is a very exciting holiday, especially for children because it involves lots of chocolate and one of the fluffiest and loveliest animals: the bunny. This year Easter is celebrated on March 27, right at the beginning of Spring. With…
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,…
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…
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…
Meet Beatrix the BDFA Easter Bunny, the newest member of the Batten Disease Family Association team. She is a digital bunny, so you can only meet her online. Beatrix is friends with Boris_the_bear and together they are raising awareness for Batten disease.…
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…
Happy to support Mediaplanet’s Rare Diseases campaign. The campaign is distributed through The Independent newspaper on 29th February, distributed at world leading events and is published online on Health Awareness. Learn more here: http://www.healthawareness.co.uk/rare-diseases
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…
Rare Disease Day takes place on the last day of February each year. This year its the 29th February 2016 The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases…