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Yesterday, Wednesday 13 Nov 2019, the first infusion of Brineura was given to a child at Great Ormond Street Hospital as part of the new Managed Access Agreement between BioMarin and NHS England. The child would not have been able to receive the treatment without this Agreement in place.
This is a major milestone in the treatment of CLN2 Batten disease and we are grateful to everyone who worked so hard to reach this point.
We also think of those children for whom this day has come too late and send their families our best wishes.
There will be more news about the progress of Brineura in the near future so watch this space.

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

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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.

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£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