General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
Epilepsy Masterclass- With Dr Ruth Williams

Join Dr Ruth Williams, Consultant Children’s Neurologist for a session on epilepsy and Batten disease. Monday 9th August @ 5pm, on Zoom Please RSVP to admin@bdfa-uk.org.uk for the link. Hope to see you there!

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Brineura In The Eyes Funding Target Smashed!

The BDFA is absolutely delighted to announce that through the incredible hard work of families, the target for the compassionate use programme at Great Ormond Street (GOSH) has been not just met but exceeded. The total amount raised is £212,749.51…

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2021 BDSRA Annual Family Virtual Conference- Sign Up Now

The BDFA is delighted to partner again with the BDSRA (Batten disease support and research association) for their annual conference that is yet again online. As last year, we will be sending out conference boxes full of activities and conference…

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National Day Of Reflection 2021

National Day of Reflection 2021 On this national day of reflection, one year since the first lockdown began on 23rd March 2020, we are remembering all those have been bereaved whatever the cause, especially those within our own batten community.…

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The Amber Trust Launches Major New Music Service, With Music In Mind In Association With The Amber Trust

With Music in Mind by Amber Trust Monday 16 November 4-5pm With Music in Mind is The Amber Trust's pioneering new music service for families who have a visually impaired child with neurodegenerative disease, such as Batten disease. This webinar…

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BDSRA Online Conference July 10th – 12th 2020

BDSRA online conference July 10th - 12th 2020 SIGN UP DEADLINE TUESDAY 9TH JUNE We are official partners of the BDSRA (Batten Disease Support and Research Association) in the US as they are holding their annual family conference entirely online.…

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ONE WEEK TO GO Untill International Batten Disease Awareness Day 2020!

ONE WEEK TO GO until International Batten Disease Awareness Day! What you can do to raiseawarenes and be orange on the day? Use #battendiseaseuk #battenday2020 on your social media posts Dress in orange, but not just you, the dog, the…

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BDFA Financial And Organisation Update May 2020

BDFA Financial and Organisation Update May 2020   We held a zoom meeting earlier this month to discuss the BDFA’s accounts (year-end August 2019) and we were joined by 11 parents as well as professionals working in the Batten arena.…

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Reminder Of Virtual Family Meeting Tomorrow- Friday 1st May, And Welcome Richard

A Quick Reminder, it is not too late to sign up!   Just a reminder that we have our ‘pre-AGM’ family meeting tomorrow at 2pm on Zoom about the BDFA’s accounts (year end 2019) and our current position and future…

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*** UPDATE *** BDFA MEDICAL WEBINAR- CHANGE OF TIME

*** UPDATE *** BDFA MEDICAL WEBINAR- CHANGE OF TIME Wednesday 22nd April- NEW TIME 4PM Dear All,   Just to confirm our BDFA medical webinar tomorrow. Please note the change in time of 4pm.   Unfortunately Professor Gissen has had…

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