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Evilina

Evelina London are looking to collect information from your child’s medical records as well as the results of any tests that your child may have had, and we may also ask your permission for researchers to use existing samples of biological material (i.e. blood, skin cells, other cells) that may have been taken during the period of confirming the diagnosis. We will not ask your child to undergo any extra tests or procedures for the purpose of this study.

If you would be willing to help us with this study, please contact me on 0207 188 3998 or ruth.williams@gstt.nhs.uk for further information.

Read the full letter here

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