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