Thank you to everyone who has been in contact about Awareness Day on Friday 7 June. It is great to hear about all your plans to mark this important day; thank you for all your support. We have put together…
Get into the Festive mood by running through some iconic London locations dressed as Santa! This fun event is an ideal way to raise vital funds for the BDFA and to start your festive activities. Each place costs £23 +…
Join us for this year’s London Marathon Walk on 22nd September 2018, taking in some of the capital’s iconic sights and less-visited corners. The route passes locations used in 26 films, from classics including Chariots of Fire and The Italian…
BOOK NOW Do you want a different challenge? Would you like to join us and see beautiful Snowdonia by moonlight and raise money for the BDFA at the same time? 9th-10th June 2018 Snowdonia National Park in North Wales is…
On a beautiful June evening we were lucky enough to host our very first Starlight Ball. It happened to be held on awareness day. We were thrilled to see so many people support the BDFA and also have a fantastic time…
Many of you know Harriet Lunnemann who is the BDFA support and advocacy worker. Not only does Harriet travel the country supporting families on behalf of the BDFA, she also volunteers with families living with disability in Uganda. Now she…
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…
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…
After our amazing Family Conference last weekend. We have posted the photos taken over the weekend on out facebook page for you to see and share! We will have our video up very soon!
On Monday evening, 5 year old Ollie Carroll and his family attended the WellChild Awards Ceremony in London to receive his award for Most Inspirational Child (aged 4-6) from HRH Prince Harry. Brave Ollie, who has CLN2 (Late Infantile Batten disease),…