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.

Facilty

Reference centre (CRMR)

N° of seats

7

Representatives

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


Centre 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


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

Representatives

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


Reference centres (secondary sites)

5

C Bouvattier (CR DEV-GEN)

L Amar (CRMRS)

P Touraine (CR PGR) 

I Netchine (CMERCD)

G Raverot (CR HYPO)


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


Patient organizations

3

Titulars : Claudine Colin (Association Surrénales), Béatrice Demaret (Association Grandir), + alternate

Alternates : Nathalie Besnault (Association MAIA), Philippe Brun (Association ASSYMCAL)


Genetic diagnostic laboratories

2


Hormonal analysis laboratories

[Translate to English:] 1

Titular : S Trabado

Alternate : S Baron


Research teams

2

Titulars : A-P Roqueplo, N de Roux

Alternate : I Netchine


Regional heads of FIRENDO projects

1

par rotation


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

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 :

Sabine Ghenim

 


    Competence Centre, Reims

  • BaMaRa training
  • Establishment of an undiagnosed rare disease registry

Fabienne Larrieu

 


Competence Centre, Bordeaux

  • BaMaRa training
  • Implementation of a single multidisciplinary consultation meeting tool

We thank all former members of FIRENDO network who largely contribute setting up epidemiological monitoring, drafting action plans and leading working groups:

Sabine Ghenim

 


    Competence Centre, Reims

  • BaMaRa training
  • Establishment of an undiagnosed rare disease registry

Fabienne Larrieu

 


Competence Centre, Bordeaux

  • BaMaRa training
  • Implementation of a single multidisciplinary consultation meeting tool

Laura Bousset

 


GReD Institute, Clermont-Ferrand

  • Scientific project manager at FIRENDO

 

 

  • Laura Bousset
    Chargée de mission scientifique et GT Recherche
    Clermont-Ferrand

     

     

  • 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"