i am a caregiver

As a rare caregiver, your priorities may change and evolve. Find customiSed resources and information geared to caregivers like you.

By registering with us you’ll gain access to the Rare Community so you can receive relevant updates, join discussions and access resources.


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The answers to all the questions we get asked most often.

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Share your Rare Disease journey via our blog and help to educate, motivate and inspire. By registering with us you’ll gain access to the Rare Communicator App so you can receive relevant updates, join discussions and access resources.


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tell your story
to read our patient stories  click here