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The consortium

This study is supported by the international consortium "Knowing and Treating Kosaki/Penttinen syndromes", set up in December 2019 by Prof Laurence FAIVRE, under the responsibility of Dijon Bourgogne University Hospital and with the support of the ITHACA European Reference Network (ERN).

This consortium brings together physicians in charge of patients with KOGS/PS, whether treated or not, published or not, and researchers working on PDGFRB. Since its creation, many international teams have joined our project, including the team of Professor Kosaki in Japan.


As of May 2023, the consortium already includes 21 teams from 12 countries around the world.

Click on this image to see all the Map

the consortium international map

The different members of the consortium meet online every six months to :


  • update the knowledge gained on the syndrome through the follow-up of known and newly diagnosed patients


  • determine the most appropriate follow-up and treatment recommendations


  • integrate the new centres involved


  • validate the targeted studies


  • define a strategy for the dissemination of the results (posters at conferences, publications, etc.)

Following the March 2023 meeting, a Steering Committee was set up consisting of :


  • Pr Laurence FAIVRE, Project Coordinator, Dijon Bourgogne University Hospital (France)


  • Dr Cecilie BREDRUP, Haukeland University Hospital, Bergen (Norway)


  • Dr Alison FOSTER, Birmingham Children's Hospital (United Kingdom)


  • Kenjiro KOSAKI, Keio University of Medicine, Tokyo (Japan)


  • Dr Dinel POND, Children's Hospital of Minnesota (USA)


  • Dr Cecilie RUSTAD, Oslo University Hospital (Norway)

  • Dr Tara WENGER, University of Washington Medical School, Seattle (USA)

  • Dr Jean-Baptiste DEMOULIN, de Duve institute, Woluwe Saint Lambert (Belgium)

Their role includes helping to validate project documentation.

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