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We have been notified that unfortunately the next NICE HST meeting due on 25th July has been postponed. We are waiting to hear when it has been rescheduled for and will inform everyone when we know. We understand how frustrating this is for the community and how disappointing this news will be. The BDFA are doing all that we can to ensure that there is a positive outcome from this process and we understand that although this is frustrating it gives all parties involved time to reflect and negotiate for the best outcome for all patients. We look forward to working with all parties to achieve a good outcome for the patients and their families.

If you have any questions or queries please contact Harriet: support@bdfa-uk.org.uk 07876712553

Donate to the work of the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease