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International Batten Disease Awareness Day

Tuesday 9th June 2020


We are getting very excited about Batten disease awareness day next Tuesday 9th June which we are sharing with international peers.

We are kicking off our awareness work on the Tuesday itself and will be sharing stories and videos from across the Batten community throughout the entire week through to the following Tuesday (16th).

Key dates:

Tuesday 9th June- 8pm (awareness day itself) – Evening Family Zoom Meeting

Obviously there will be a lot going on during the day. We are also launching our first ‘evening’ family Zoom at 8pm. If you are not a member of our closed family group on Facebook, you need to join for the link to join the meeting.

Friday 12th June, 4-5.30pm – Research and Treatment Update Zoom webinar

Research and Treatment Update Zoom webinar with Professor Paul Gissen from Great Ormond Street and Professor Sara Mole from UCL, facilitated by our trustee Dr Zlatko Sisic, the lead on our medical and scientific strategy.
We are really excited about our first presentation to update families on the latest research and progress on treatments for different types of Batten disease. There will be lots of time for questions.
To book on to this please email Lisa at

Tuesday 16th June 9.30-11Diagnosis parent master class on Zoom

We have been doing some preliminary work around an early diagnosis project for all types of Batten disease. We know that the road to diagnosis can be incredibly varied, stressful and it can often take years to get a firm diagnosis. We want to invite you to tell us about your experiences and share an update on how we will take this forward.
To book on to this please email Lisa at


We cannot wait to see what you all get up to raising awareness for Batten Disease, so don’t forget to send photos and let us know what you are up too!

Use #bdfa_battendiseaseuk #battenday2020 #bdfa  #battendisease on your social media posts and tag us on Facebook.

If you haven’t seen, we have re lauched our Instagram page @bdfa_battendiseaseuk, find us here

See you all next week!

The BDFA team




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