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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.

Rare disease network

1

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

7

Représentants

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

Reference centres (secondary sites)

5

Centres of competence (CCMR)

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

Diagnostic laboratories

2

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

Diagnostic laboratories

2

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

Regional heads of FIRENDO projects

1

FIRENDO project manager

1

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 FIRENDO

    Catherine Pouzat

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

  • Haïfa Rahabi-Layachi FIRENDO

    Haïfa Rahabi-Layachi

    Région Sud & GT "Liens avec les associations des patients" ;
    actuellement ARC du CRMR HYPO

  • Anne Faucou FIRENDO

    Anne Faucou

    Région Rhône-Alpes Auvergne & GT "Bonnes pratiques et recommandations" ;
    acutellement ARC du CRMR DEV-GEN

  • Cécile Debacque FIRENDO

    Cécile Debacque 

    Région Ouest

  • Sophie Latour

    Région Sud-Ouest

  • Driss Farhi FIRENDO

    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 FIRENDO

    Taïssia Lelekov Boissard

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

  • Delphine Le Verger FIRENDO

    Delphine Le Verger 

    Région Île-de-France & GT "Lien avec les associations de patients"

  • Marion Provost FIRENDO

    Marion Provost

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

     

     

     

  • Yvonne Varillon FIRENDO

    Yvonne Varillon

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

Who's who in FIRENDO ?