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…
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…
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.…
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
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. …
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,…
Is your New Year's resolution to get fit and have fun? And to raise money for the BDFA whilst doing it? Then sign up for the Vitality British London 10K, staged through the heart of central London passing many of…