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Help us produce the insurance information you need!

Accessing appropriate insurance can be a significant problem for many patients and families affected by genetic conditions. Patients and families affected by genetic conditions often find it difficult or impossible to access appropriate or affordable insurance cover.

Many patients are not aware what insurance companies are allowed, or not allowed, to ask them, or what they need to tell them when applying for insurance.

Genetic Alliance UK is now running a survey to understand patients’ experiences including any challenges they face, or concerns they have, when applying for insurance.

This information will help Genetic Alliance UK to update the resources available on their website to better meet the needs of the patient community.

You can take the survey Here

Donate to the BDFA

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

Thank you for making a donation to the work of the BDFA.

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