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

Contacter le 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.

Facilty

Reference centre (CRMR)

N° of seats

Les contacter

Representatives

Juliane Leger, Michel Polak, Patrice Rodien, Thierry Brue, Pierre Mouriquand, Corinne Vigouroux, Jérôme Bertherat

Centre of competence (CCMR)

Hélène Bony-Trifunovic, Brigitte Delemer, Véronique Kerlan

Les contacter

Rare disease network

Maria Givony

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.

Facility

Reference centres (CRMR)
(lead sites)

N° of seats

Représentants

J Leger, M Polak, P Rodien, T Brue, P Mouriquand, C Vigouroux, J Bertherat

Les contacter

Reference centres (secondary sites)

Claire Bouvattier (CR DEV-GEN)

Laurence Amar (CRMRS)

Philippe Touraine
(CR PGR)

Sophie Christin-Maître (CMERCD)

Gérald Raverot (CR HYPO)

Les contacter

Centres of competence (CCMR)

(copie 3)

B Delemer, CCMR Reims pour CRMR HYPO, TRH, DEV-GEN, PGR, PRISIS, MERCD, Surrénales
M Cogne, CCMR La Réunion Saint Pierre pour CRMR HYPO
A Tabarin, CCMR Bordeaux pour CRMR HYPO, TRH, Surrénales

(copie 6)

Patient organizations

in turn:
Association MAIA,
Association ASSYMCAL,
Association Surrénales,
Association Grandir

Diagnostic laboratories

Anne Barlier (genetics),
Marie Piketty (hormone analysis)

Research teams

in turn : Serge Amselem, Antoine Martinez, Irène Netchine, Marc Lombès

Regional heads of FIRENDO projects

in turn : Haïfa Rahabi, Sabine Ghenim, Driss Farhi, Anne Faucou, Catherine Pouzat

FIRENDO project manager

Maria Givony

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.

10

work groups

100

membres involved

3-12

people per group

The call for participation is permanently available and is based on voluntary work.

Network of regional heads of projects

The FIRENDO network has named seven regional delegates called heads of project, in the expert centres of seven large inter-regions in France (North, East, West, Rhône-Alpes-Centre, South, Southwest, Île-de-France). Heads of projects have a triple task :

To serve as a regional relay for all of the FIRENDO network communication campaigns, but also to transmit field data ;

Participate in a FIRENDO work group, especially in the implementation of ideas provided by these think tanks.

To collect epidemiological data from patients passing through the regional expert centres.

The list of FIRENDO heads of projects in place on the 1st September 2018 is as follows:

Southwestern Region: Sophie Latour, based in Bordeaux;
Southern Region: Haïfa Rahabi, based in Marseille;
Eastern Region: Sabine Ghenim, based in Reims;
Rhône-Alpes-Centre Region: Anne Faucou, based in Lyon;
Île-de-France Region: Catherine Pouzat, based in the Trousseau Hospital in Paris ;
Northern Region : currently hiring,
Western Region : Cécile Debacque, based in Angers.

Un grand merci aux anciens chargés de mission qui ont largement contribué à la mise en place du suivi épidémiologique, rédaction des plans d'action et l'animation des groupes de travail :

Catherine Pouzat

Région Île-de-France & GT "Bases de données"
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

Cécile Debacque

Région 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"
Marion Provost

Région Sud-Ouest & GT "Coordination avec l'expertise pluridisciplinaire"
Yvonne Varillon

Région Rhône-Alpes Auvergne, GT "Bonnes pratiques et recommandation" & "Dosages hormonaux rares"