Meet Russell, Trustee of the LHON Society
Russell’s son lost his sight over a matter of weeks at the age of 24 due to LHON, a rare hereditary condition.
Meet Bhavna, CEO of Stargardt’s Connected
Bhavna’s world changed forever when her seven-year-old son, Ethan, was diagnosed with Stargardt’s: an inherited, condition that slowly leads to sight loss.
Meet Wendy, Chair of the Norrie Disease Foundation
Wendy’s son was born with Norrie disease, a rare genetic condition that causes blindness, hearing loss and developmental delays.
Meet Allison, co-founder of Ring 20 Research and Support UK
As a carer of a son diagnosed with ring 20 syndrome, Allison Watson increasingly felt the need for a patient group that would provide support and advice to help families and patients cope with the condition.
Meet Amanda, Trustee and Chair of The EOS Network
Amanda’s two children, Samuel and Heather, were born with eosinophilic gastrointestinal disease (EGID) which makes eating incredibly painful.