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…
Cancellation of AGM on 25th April 2020 Dear all, It is with great regret that we, the BDFA, have had to make the disappointing decision to cancel our AGM in April. We hope that you understand, in line with organisations…
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…
Thank you to everyone who has been in contact about Awareness Day on Friday 7 June. It is great to hear about all your plans to mark this important day; thank you for all your support. We have put together…
Registration for NCL 2018 is now open on the conference website: http://www.ncllondon2018.com Please contact conference organisers Bioscientifica who can provide details of discounted rates for families: ncl2018@bioscientifica.com
On a beautiful June evening we were lucky enough to host our very first Starlight Ball. It happened to be held on awareness day. We were thrilled to see so many people support the BDFA and also have a fantastic time…
On the 9th June, we would like to mark Batten Disease Awareness Day and we would love for you to help us turn the world orange! Without awareness our job of securing vital services for families and essential research into potential…
These are the Conference documents that have been sent to those attending. If you require them again please see below. Conference Outline Kids Conference Outline Confirmation Letter There is now LIMITED Booking available for BDFA Family Conference 2017 -…
Laboratory Open Day at Manchester Metropolitan University hosted by Professor Tristan McKay and the BDFA: Thursday 30th March 2017 The BDFA would like to thank Professor Tristan McKay and his group at Manchester Metropolitan University (MMU) for hosting a very…
As it is nearly Mother’s Day, we would like to show our support for mothers in the toughest of times. Please help us by sharing a photo of you and your children. You can save the image below and add…