It seemed quite ambitious at the time when EA patient support groups from Europe and Australia were given the opportunity to present at the first-ever International Congress on Esophageal Atresia, and to unveil the banner and logo of ‘EAT’ as an embryonic International Federation of EA support groups.
That was Lille, France in May 2010.
By the autumn of 2011, EAT was a formally incorporated organisation with seven founder member associations. It has participated at each of the subsequent bi-annual International EA Congresses, most recently in Rotterdam in October 2014 when EAT was also part of the congress organising committee.
In 2016 the event will move to Australia, and OARA (the Australian support group) is representing EAT on the local organising committee. EAT’s membership has also grown over the years and – with new groups recently established in Belgium and Turkey – there will shortly be eleven member associations.
Now EAT has taken a further important step on behalf of all EA patient support groups, by establishing its own Medical Advisory Committee. The majority of its members (including paediatric surgeons, paediatric GIs, an ENT specialist and a nutritionist) are also steering committee members from INoEA* – the medical profession’s own international network on OA.
On 16th October 2015, the EAT Board met in Stuttgart with its new Medical Advisory Committee (MAC) and a number of other leading medical professionals for a first workshop. Amongst those attending with the EAT Board were:
Prof. Frédéric Gottrand (France, and President INoEA),
Prof. René Wijnen (Netherlands, also a Steering Committee member of INoEA),
Dr. Ed Hannon (GOSH **, London)
Prof. Benno Ure (Germany, and currently President of EUPSA – the European Paediatric
Surgeons’ Association).
Joining by Skype were Prof. Christophe Faure (Canada, Vice President INoEA) and Dr Luigi Dall’oglio (Italy, and also a Steering Committee member of INoEA).
The day had a packed agenda covering a range of topics including: a review of EAT’s objectives and those of its Medical Advisors; a progress report from Prof. Gottrand on how INoEA is developing its professional network; INoEA’s project to define ‘longgap’ EA (readers may be surprised to learn that there is no precise medical definition of what constitutes ‘long-gap’); and an update on the planning for the 2016 International EA Conference.
Prof. Faure reported on the subject of GI related after-care guidelines which are being developed by a group of doctors from ESPHGAN and NASPGHAN ***, four of whom are also EAT Medical Advisory Committee members. A major success for EAT was an invitation to be part of the group which will review these guidelines in December prior to the planned publication date of January 2016.
Dr Dall’oglio reported on another tissue-engineering (TEES) initiative for which EU funding is currently being sought, together with a request for non-financial support from EAT. This project should complement existing tissue-engineering work in France and the joint GOSH/ICH** project led by Paolo di Coppi; EAT has expressed its support for this latest TEES project on condition that there is as much co-operation as possible between these three research teams.
Profs Wijnen and Ure reported on recent work on the viability of a European Reference Network (ERN) being established for EA. These networks are an inherent element of the European health policy for rare diseases (including rare congenital malformations such as EA) and this policy is intended to establish a network of recognised centres which can both establish and deliver best practice treatment and aftercare.
Prof. René Wijnen and JoAnne Fruithof, Vice-Chair of EAT also presented feedback from the first national conference of EA centres in The Netherlands. The Dutch EA support group, VOKS, is heavily integrated into the ongoing rationalisation of paediatric centres in The Netherlands and has a key role in the review process.
The importance of the patient’s perspective in the development of healthcare is now
recognised both nationally and internationally, and the involvement of patient groups
in most major national, European and international healthcare projects is usually
mandated.
This is a very welcome development for groups like EAT and its member associatons.
But it introduces a new dimension to our activities and brings with it new responsibilities.
The need for effective liaison and for us to develop our working relationships with the medical profession – both for our member associations in their own countries and for EAT internationally – has never been more important. As these relationships develop and we experience increased collaboration with the medical profession, we will, of course, bring you further news and updates on the EAT web-site.
* INoEA – International Network on Esophageal Atresia
** GOSH – Great Ormond Street Hospital; ICH – University of London Institute of Child
Health
*** ESPHGAN / NASPGHAN – European Society for Paediatric Gastroenterology Hepatology
and Nutrition / North American Society for Pediatric Gastroenterology, Hepatology
and Nutrition
Graham Slater, Chairman of EAT
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The 7th international Conference on EA will be held in Istambul, Turkey, in 2025.