General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
Looking For A New Fundrasing Role?

Come and join our team as our new Head of Fundraising.The BDFA is looking to diversify its income streams, secure its future and grow the support it can offer to families.We are looking for a strong fundraiser who has a…

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POST TO THE BDFA- URGENT UPDATE

POST TO THE BDFA- URGENT UPDATE 16 September 2020 We are currently not receiving any of the post that is being sent to our head office in London (209-211 City Road). There is an issue with the redirect currently which…

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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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BDFA MEDICAL WEBINAR,  Wednesday 22nd April- 11am

BDFA MEDICAL WEBINAR Wednesday 22nd April- 11am We are holding our first BDFA Medical Webinar next Wednesday at 11am. We welcome our guests for this event Professor Paul Gissen and clinical nurse specialists Laura Lee and Becky Bower. They will be discussing…

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All donations help us to provide the best support we can to families affected by Batten Disease.

 

Thank you for your support.