Tag: rare disease

Pure Tech 10th May 2021

Taking rare disease in my stride

Four-year-old Oliver Hardwell shows that he is not going to let pontocerebellar hypoplasia – PCH – hold him back. Oliver is one in a million if not one in a billion. While his diagnosis is not clear cut, genetic tests suggest that ...

• by Comms Team

Chronic Conditions 26th February 2020

Rare is many, rare is strong, rare is proud

Lara Chappell was in complete shock when her one-year-old son Pierre was diagnosed with a rare genetic disorder called Angelman Syndrome. She’d been expressing concerns to multiple health professionals about her baby’s delayed development from the time he ...

• by Comms Team

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