BDFA Peer Befriending training weekend held in London. The team met together in person to receive training and also to spend time together, offering one another support. #peerbefriending #battendisease

As part of our work with Disabled Children's Partnership we are supporting thier new campaign, Sign their petition here: newlifecharity.co.uk/sign-petition/ #ActNow #FightForOurFuture

We’re pleased to share @newlifecharity’s new report, Fight For Our Future, which shows the
needs of disabled children and their families are simply not a priority. We are urging our
supporters to read & share the report: newlife.support/fight-for-futu…

The BDFA are thrilled to share that the funding received from Global's Make Some Noise will fully support our Peer Befriending Service for the next two years!

The BDFA feels incredibly privileged to be one of the 41 small charities supported by Global’s Make Some Noise.

Thank you🧡

Today is National Siblings Day!
This special day is a chance to shine a huge light on the amazing value of siblings, who play a huge role in the lives of their brothers and sisters with Batten Disease.
You are amazing! #ItsaSiblingThing #NationalSiblingsDay2024 Sibs

💜💜 The 26th March is Purple Day, the international day for epilepsy 💜💜

Please share and spread awareness today for people living with epilepsy, including our children and young people with Batten Disease. 🧡
#purpleday

Together for Short Lives has launched their ‘Short Lives can’t wait’ campaign
Seriously, ill children and their families are not getting the care they need, because of where they live.
Please join us and add your name to Jim’s letter to the PM below.
togetherforshortlives.org.uk/campaign/short…

Today Liz, BDFA’s interim CEO headed to London to the Palace of Westminster for the Westminster Rare Disease day 2024 reception. Read more here
facebook.com/bdfauk
#RareDiseaseDay #battendisease

In the UK, a disease is considered rare if it affects fewer than 1 in 2,000 people. READ MORE facebook.com/bdfauk
#RareDiseaseDay #ShowYourRare #Awareness #Support #RareDiseaseAwareness #battendisease #battendisease awareness

Raising awareness for rare diseases is essential for improving early diagnosis,treatment,access to support, research, advocacy,ultimately, the quality of life for individuals living with these conditions. #RareDiseaseDay #RareDiseaseAwareness #battendisease #battendisease awareness

🧡Today we stand together for Rare Disease day!Let's raise awareness & support for those living with rare diseases.Together, we can make a difference in the lives of millions around the world who are affected by a rare disease #RareDiseaseDay
bdfa-uk.org.uk/today-we-stand…

Joint Statement to the Global Batten Disease Community regarding Taysha Gene Therapies Provides Update on Deprioritized Pipeline Programs.

You can read the statement and announcement here bdfa-uk.org.uk/taysha-gene-th…

It’s International Epilepsy Day - a day for coming together to raise awareness. Batten Disease is one of many rare and complex epilepsies affecting families in the UK. #EpilepsyDay #myepilepsyjourney #strongertogether bdfa-uk.org.uk/international-…

Joint Statement to the Global Batten Disease Community regarding the future of the CLN3 and CLN6 gene therapy clinical programs led by Amicus Therapeutics

bdfa-uk.org.uk/joint-statemen…

Neurogene Announces Business Update and 2024 Outlook, CLN5 Program Update
Read the update on our website
bdfa-uk.org.uk/neurogene-anno…