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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.


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All donations help us to provide the best support we can to families affected by Batten Disease.

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