We were delighted to hear that our very own TOFS trustee and, not least, OA/TOF Adult Graham Slater has recently been elected to the EURORDIS Board of Directors!
EURORDIS (Rare Diseases Europe) is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally.
This invitation to join the Board of Directors reflects Graham’s international work over the past 12 years as a Special Patient Advisor and former President of EAT (the international federation of OA support groups), with the International Network of Esophageal Atresia (INoEA) as well as his work with the European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA)
Graham has worked tirelessly to promote collaboration with medical professionals in the pursuit of improved care and outcomes for OA patients both in this country and across the world.
He says: “By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.”
And ultimately that will be an opportunity to raise awareness of this rare condition outside of the TOFS community – which is good news for us all!