i am a rare patient
Are you a rare disease patient looking to connect and become more involved?
Here, you can find important resources, the latest information, and events to help you navigate the complexities of your rare disease.
By registering with us you’ll gain access to the Rare Communicator App so you can receive relevant updates, join discussions and access resources.
tell your story
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.
Rare Assist was developed with the aim of assisting rare disease patients with obtaining access to treatment and services.
The project ensures that patients receive appropriate support from presentation of symptoms through to end of life care.
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