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International network on EA (INoEA)

Rationale :

- EA is a rare disease and therefore requires large cohorts from different centres/countries to make progress in understanding the disease, defining standard of care, developing innovative approach, obtaining information on outcome and prognosis

- There have been recently national initiatives (i.e. Canada, France, European Union…) to encourage networks on rare diseases

- Family support groups are active and starting to build international family support group confederation (ie EAT in Europe and Australia)

- There is a need for a multidisciplinary approach of EA (surgeons, neonatologists, prenatal diagnosis health professionals, geneticists, specialized pediatricians (gastro/pulmonologist…), speech therapists, psychologist, nurses…

- The 2 first meetings on EA held in Lille (2010) and Montreal (2012) demonstrated a great interest for such meetings and the need for collaborative work and research projects.

Aims :

- To organize every 2 years an international meeting on EA

- To initiate international consensus and guidelines on EA.

- To initiate international collaborative research programs

Organization :

- A steering committee including representative of the most active groups in the world to coordinate the activities of the network was created in February 2013

Steering committee :

- Frederic Gottrand (Lille) president (PedGI)

- Christophe Faure (Montreal) vice president (PedGI)

- René Wijnen (Rotterdam) (Pediatric surgeon)

- Arnold Coran (USA) (Pediatric surgeon)

- Luigi Dall’oglio (Rome) (Pediatric surgeon)

- Risto Rintala (Helsinki) (Pediatric surgeon)

- Robin Cotton (Cincinnati) (ENT)

- Tom Kovesi (Ottawa) (Pediatric pulmonologist)

- Usha Krishnan (Sydney) (PedGI)