Patient-based Registry

Association Noonan

The Noonan association, a non-profit organization under the French law of 1901, is recognized for its solid foundation in Rasopathies (all diseases affecting the RAS genetic pathway) in France. For many years, it has been involved in studies and projects aimed at improving patient care and developing genetic research.

This work, carried out in collaboration with scientific researchers and the medical profession, has already led to a better understanding of these diseases, the discovery of new genes and is contributing to the search for treatments and gene therapies.

The Noonan association works for and with families affected by this syndrome, and in general on the popularization and dissemination of knowledge.

The Noonan association, created in 2017, operates in France and abroad. It has a scientific council, a board of directors and regional referents.

It is affiliated with the Alliance Maladies Rares, the Anddi-rares rare disease health network, Eurordis and ERN Ithaca (European reference network for neurodevelopmental disorders and intellectual disability). Our president is also vice-president of the ERN's patient council.It maintains numerous collaborations with structures (rare disease reference and competence centers, rare disease expertise platforms, Agence nationale de sécurité du médicament (National agency of drug security), Haute Autorité de Santé (French Health Authority), Ministry of Health, Fondation Maladies Rares (Rare Diseases Foundation), hospitals, etc.) and associations worldwide.

She is a member of the extended college of the Paris Nord rare disease expertise platform, of the Rares Breizh platform as a patient representative, and exchanges with many other platforms and centers. It organizes regular conferences with medical, scientific, paramedical, rehabilitation and psycho-social professionals, as well as an annual association day and a large number of actions throughout the year.

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Photo of Ioel Detton
Ioel Detton