We are very excited to announce our Charity lunch in the Long room at Lord's: Batting for Batten. The lunch starts at Midday until 4PM, on Wednesday 6th July 2016. Our Patron Sir Andrew Strauss will be in attendance along with other world…
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…
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…
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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…
On the night of 22nd March, two of the BDFA’s volunteers were nominated and presented with certificates of appreciation at the Hart Volunteer Recognition Event held at The Harlington in Fleet. Andrea West nominated Emilia Stefanescu, who is working as…
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…