Organization chart
Network coordinator : Pr Jérôme Bertherat
Pr Jérôme Bertherat is the coordinator of the Reference Centre for Rare Adrenal Gland Diseases, head of the Endocrinology Department of the Hôpital Cochin, Assistance Publique-Hôpitaux de Paris and director of the research team "Genomics of endocrine tumours and signalisation" at the Institut Cochin.
Project manager: Maria Givony, PhD
The project manager organizes meetings and other gatherings for the network members, she represents the FIRENDO network alongside the network leader in events concerning rare diseases, she is in charge of FIRENDO network communication and spreading information about rare endocrine diseases, she establishes the methodology for epidemiological data collection, she coordinates the regional network of heads of projects and is the relay between work groups and the network leader. A former student of the Ecole Normale Supérieure and a trained scientist, Maria Givony joined the FIRENDO network as project manager in October 2014.
The Network Bureau
Made up of the main coordinators of 6 reference centres and of three representatives from the 23 centres of competence, this bureau decides which general strategy to follow and deliberates on how the main directions for the network are set up. The bureau meets every six months, twice a year.
Board of Directors
The executive governing board which includes all of the types of facilities belonging to FIRENDO (21 members), the board of directors meets every six months, twice a year. Its members deliberate on the network's activities and collect the opinions of the members of each of the organisations in the group. They are informed about Ministry of Health decisions concerning the future of networks and the structures they include.
Work Groups
The work groups are the real "think tanks" of the network: they think along the main lines of action. Each group has a couple of coordinators at its head. The groups meet up every one to two months, alternating face-to-face and remote meetings. In both cases the FIRENDO network covers the costs for web-conferences and travelling.
L’appel à participation est ouvert de façon permanente et repose sur le principe du volontariat.
Network of regional heads of projects
Here is the list of regional heads of project on 1st april 2020 :
We thank all former members of FIRENDO network who largely contribute setting up epidemiological monitoring, drafting action plans and leading working groups:
- Attaché de recherche clinique impasse diagnostique, à mi-temps
- Villes de son périmètre : Nantes, Poitiers, Tours
Basée à : Centre de compétence Nantes, services du Dr Delphine Drui et Pr Sabine Baron
Sabine Ghenim
- BaMaRa training
- Establishment of an undiagnosed rare disease registry
Competence Centre, Reims
- Attaché de recherche clinique impasse diagnostique, à mi-temps
- Villes de son périmètre : Strasbourg, Nancy
Basée à : Centre de compétence Strasbourg, service du Pr Nathalie Jeandidier
Fabienne Larrieu
Competence Centre, Bordeaux
- BaMaRa training
- Implementation of a single multidisciplinary consultation meeting tool
-
Anne SEGUIN
ARC "Observatoire de diagnostic" à Nantes
-
Carole Foulon
ARC "Observatoire de diagnostic" à Lille
-
Laura Bousset
Chargée de mission scientifique et GT Recherche
Clermont-Ferrand
-
Catherine Pouzat
Région Île-de-France & GT "Bases de données"
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Haïfa Rahabi-Layachi
Région Sud & GT "Liens avec les associations des patients" ;
actuellement ARC du CRMR HYPO -
Anne Faucou
Région Rhône-Alpes Auvergne & GT "Bonnes pratiques et recommandations" ;
acutellement ARC du CRMR DEV-GEN
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Cécile Debacque
Région Ouest
-
Sophie Latour
Région Sud-Ouest
Sophie Latour
Région Sud-Ouest
-
Driss Farhi
Région Sud-Ouest
-
Fanny Minime
Région Ouest & GT "Actions de formation en commun"
-
Euma Fortes Lopes
Région Nord & GT "Recherche"
-
Taïssia Lelekov Boissard
Région Rhône-Alpes Auvergne ; GT "Bonnes pratiques et recommandation" & "Dosages hormonaux rares"
-
Delphine Le Verger
Région Île-de-France & GT "Lien avec les associations de patients"
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Marion Provost
Région Sud-Ouest & GT "Coordination avec l'expertise pluridisciplinaire"
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Yvonne Varillon
Région Rhône-Alpes Auvergne, GT "Bonnes pratiques et recommandation" & "Dosages hormonaux rares"
