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…
On February 5th 2016, Tim Martin together with Ellen and Laura Bletsoe raised over £30,000 for BDFA during a Fundraising Lunch Event at the City of London Club. Tim Martin met Ellen at an event they both attended last year. …
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…
Her Royal Highness (HRH) The Countess of Wessex put her artistic skills to the test when she joined supported children and families for some cake decorating at Christopher’s on Tuesday 9 February, as part of our Guildford-based hospice’s 15th birthday celebrations.…
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,…