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Conference News

Postponement of our face to face conference


As I am sure you will understand, we have made the difficult decision to postpone our conference due to Covid19. The future is uncertain and October feels too soon for our families to meet in person, many of whom are shielding and being very careful.

The new dates will be the 24th and 25th April 2021. The conference will run from the Saturday morning to the Sunday afternoon. The venue will remain the same, the Crowne Plaza in Stratford upon Avon. If you have expressed a firm interest we will email you to confirm you would like to move that interest to next year.

However, we have opportunities to meet virtually.

Firstly, the BDFA will also hold its AGM and a virtual opportunity to meet up in the autumn (date TBC).

But before then we have the opportunity to join an ‘international’ online conference.


BDSRA online conference July 10-12 2020


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. The conference will be delivered by an app and will include the agenda, programs and sessions (pre-recorded and live) and contact and connection points. There will be a virtual exhibit hall, live link to the Memorial and more. The Batten disease organisations in Canada and Australia have also joined and it promises to be a really international experience.

As families, you can log in at or to sign up.

Families who sign up will receive a ‘conference box’ with a programme, t-shirts and other goodies for children and siblings to enjoy.

Please can anyone who signs up to the conference let the BDFA know by dropping us an email on, so we can send you out your conference box full of goodies!

We are very excited about this opportunity and we are looking forward to seeing how our US partners translate the conference to an online entity.

Any questions please ask and email or

Thank you for your amazing support, as always

The BDFA Team

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