News

TOFS' Trustee Graham meets Key Influencers at ERNICA Meeting

Published: Tue, 26th June 2018, 11:23:00 AM

TOFS' Trustee and Adult TOF Graham Slater attended an ERNICA Patient Groups' Meeting in Paris last week, continuing to raise the profile of TOF and OA on the European medical stage.

Graham is extremely well qualified to do this for the following reasons:

Firstly, he has first hand experience with TOF. Graham was the first OA baby to survive following treatment at Royal Manchester Children's Hospital. 

Secondly, he has been a Trustee and Secretary of TOFS for many years.

Thirdly, he is the Patient Groups Coordinator of ERNICA, a European reference network which focuses mainly on EA. It is one of 24 rare disease networks which have been set up in Europe to enhance international collaboration in activities focused on improving treatments for sufferers of rare diseases.

Fourthly, he is also Chairman of EAT, the Federation of Esophageal Atresia and Tracheo-Esophageal Fistula support groups, of which TOFS is a founder member.

 

Graham and his EAT colleagues from other European TOF/OA patient groups, and additional patient groups with supporting conditions such as Congenital Diaphragmatic Hernia (CDH) and Hirschsprungs, had fruitful discussions with key influencers and renowned academics Professors Wijnen and Di Coppi. The discussions were regarding the concerns of patients over treatment for these congenital rare diseases - most notably TOF/OA.

Professor Wijnen is Head of Paediatric Surgery at Sophia Children’s Hospital, Rotterdam and Professor Di Coppi is both Professor of Paediatric Surgery and Head of Stem Cell and Regenerative Medicine at Great Ormond Street, London. Both have supported us by speaking at our Conferences in recent years. 

Through EAT, we at TOFS have increasing influence over what the senior doctors are focussing on. Indeed Graham, in his capacity as Patient Group Co-ordinator for ERNICA, works closely with Professor Wijnen, and at least one patient group representative is engaged with clinicians in each of ERNICA’s projects.

It is worth remembering that Graham, and all our other Trustees, give up their time freely to advance the welfare of our members. We are very grateful to them all.

© Tracheo-Oesophageal Fistula Support
TOFS is a Registered Charity in England and Wales (327735) and a Private Company Limited By Guarantee without Share Capital, registered in England and Wales (2202260).
Registered address: TOFS, St. George’s Centre, 91 Victoria Road, Netherfield, Nottingham NG4 2NN.
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