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cambridge rare disease network

How is COVID-19 impacting the rare disease community?

Published on 22/06/20 at 12:26pm
Image credit: Araruna, Brazil

The COVID-19 pandemic has altered the life of just about everyone, especially patients in receiving continued treatment and care. But what does it mean for patients who already have trouble accessing therapies or with finding and engaging with others like them? The Cambridge Rare Disease Network provides a window into the current experience of the rare disease community:

Living with fibular hemimelia

Published on 08/11/18 at 04:14pm

Helena Baker, Vice President of Clinical Strategy at Medical Research Network and a trustee of the newly formed Rare Disease Nurse Network, was born with fibular hemimelia, a rare condition characterised by a congenital absence of the fibula bone, but went undiagnosed for almost half a century. She’s shares how her experience has shaped her life and her work to help others affected by rare disease

Can you tell us a bit about your condition and how you came to be diagnosed?

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