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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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International Batten Disease Awareness Day- Tuesday 9th June- Our Plans

International Batten Disease Awareness Day Tuesday 9th June 2020 4 DAYS TO GO! 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…

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BDFA 2020 Conference News

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…

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***IMPORTANT BDFA MEETING NEWS** Virtual ‘family’ Meeting To Share Our Future Plans And Financial Position

  Virtual ‘family’ meeting to share our future plans and financial position  Friday 1st May from 2-3.30pm The BDFA is pleased to invite you to a virtual ‘family’ meeting on Zoom to discuss our latest accounts (year end August 2019)…

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Welcome To Becky Bower

A big welcome to Becky Bower, who will be covering Laura while she is on maternity leave from May A message from Becky,   I just wanted to take the time to quickly introduce myself to you all. As you…

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** BDFA NEWS ** A Message From Laura Lee Our Amazing Clinical Nurse Specialist

** BDFA NEWS ** A message from Laura Lee our amazing Clinical Nurse Specialist Hello, I wanted to share with you all the exciting news that I am expecting a baby boy in June and will be going on Maternity…

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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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Urgent Family Grant Scheme To Support Families With The Challenges Faced Due To Covid-19

** Some brighter news ** The board of the BDFA is pleased to announce an urgent family grant scheme to support families with the challenges faced due to Covid-19.   We have a designated pot of £10,000 to give out…

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BDFA AGM News!

Notice of Annual General Meeting of the Batten Disease Family Association NOTICE IS HEREBY GIVEN that the Annual General Meeting of the Batten Disease Family Association will be held on Saturday 25th April 2020 12pm in the Davies Room The…

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Thank you for your support.