TOFS Trustee, Graham Slater discusses his role of patient advocate for EAT, the Esophageal ATresia gobal support group, on the latest EURORDIS Rare on Air podcast.
Over the last 5 years, rare disease patient organisations have designated patient representatives who volunteer to work alongside clinicians in the European Reference Networks (ERNs).
The role of these ePAG advocates is to represent the needs of their community by collaborating with the clinicians involved in the ERNs and being a bridge between the Networks and their community.
In this episode, Inés Hernando, ERN and Healthcare Director at EURORDIS, talks to Maria Barea and Graham Slater, about their personal story as ePAG advocates, how they became involved in the European Reference Networks, how they are contributing to the work of the Networks and their advice for other people who would like to volunteer.
About Graham
Graham was born with oesophageal atresia in 1953. He became a Trustee of TOFS in 2008, and was TOFS Honorary Secretary from 2009 until 2022. From 2011 to 2021 he was the Chairman of EAT, the Esophageal ATresia gobal support group, and has been a special patient advisor for EAT ever since.
Graham has won multiple awards for his work and is also the co-author of TOFS’ position paper, “Towards a holistic model for the treatment of those born with esophageal Atresia (OA) from diagnosis to transition and adult care”.
