Professor Tristan McKay and the BDFA would like to invite parents and carers to a Laboratory Open Day on Thursday 30th March 2017 at MMU. The day will run from 10.30am-3.30pm with a light lunch provided. BATCure is a 3-year research project with…
Bears4Rare is an initiative from Shire which aims to bring public attention to the difficulty rare disease patients face accessing treatments. Bears4Rare aims to unite the patient voice to highlight the universal challenges faced by people in the UK living…
We are delighted to announce we will be holding a BDFA Starlight Ball on awareness day – Friday 9th June Join us for Dinner, Drinks and Tunes! All proceeds go to The BDFA Single tickets £75 or a table of 10…
New College Worcester Professionals & Parents Day Dissemination of the European Education Project of Juvenile Batten Disease Join staff from Batten Disease Family Association (BDFA) and New College Worcester to find out more about an Erasmus+ project to improve educational…
Rare Disease Day takes place on the last day of February each year. This year its the 28th February 2017 The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases…
The BDFA conference will be held from 24th-26th November 2017 at the Crowne Plaza Hotel in Stratford Upon Avon. More details to follow soon. Look forward to seeing you there.
A great and much needed step forward for Batten disease, orphan drug designation by the European Medicines Authority, provides incentives for companies to conduct research into rare diseases lets hope accessible clinical trials will follow: To qualify for orphan designation,…
