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Bears4Rare is an initiative from Shire which aims to bring public attention to the difficulty rare disease patients face accessing treatments.  Bears4Rare aims to unite the patient voice to highlight the universal challenges faced by people in the UK living with a rare disease.

A short survey is being used to gather anonymous stories from patients and their families impacted by rare disease in the UK so that real patient insights can be displayed at the launch of Bears4Rare at London Waterloo Station. The launch event will take place on Wednesday 15 March with an installation of 1,000 teddy bears – each one representing a person living with a rare disease passing through the station every hour. The Bears4Rare initiative is organised and funded by Shire.

Please follow the link here for more information and to share your story:

The survey should take a maximum of 10 minutes to complete.

 

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