Knowing and Treating Kosaki / Penttinen
An international study for the benefit of patients
The Knowing and Treating Kosaki/Penttinen study aims to improve the understanding of the scientific and medical communities about Kosaki and Penttinen syndromes by working with international experts to build a database of the world's largest cohort of patients with these syndromes.
Ultimately, we hope to meet the therapeutic needs of these patients, allowing earlier diagnosis to prevent complications and improve their quality of life on a daily basis.
Knowing and Treating Kosaki/Penttinen, the whole world is mobilising !
Find out all you need to know about the teams already working with us.
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As of May 2023, the consortium already includes 21 teams from 12 countries around the world.
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Latest news
Stay informed about the progress of the project
Welcome to the new teams joining us !
By October 2024, more than 30 doctors and researchers from around the world are already involved in the project !
01 10 2024
Funding request
We have received funding from the AnDDI-Rares & OSCAR Rare Diseases Healthcare networks to make our project a reality!network to make our project a reality !
01 10 2024
Study coordination
Support us
Contact us
Pr Laurence FAIVRE
Head of the Genetics Department
Dijon Bourgogne University Hospital
14 rue Paul Gaffarel
21000 Dijon
