FIMATHO PROJECT TEAM
The project team coordinates the network’s day-to-day work and ensures implementation of the strategic orientations defined by the management committee.
It is composed of:
Appointed for a four-year term, the coordinator must be a university professor and hospital practitioner, as well as the coordinator of a rare diseases reference centre. Among their main responsibilities, the coordinator ensures the regular monitoring of the network’s projects, represents the network in dealings with organisations (such as the DGOS), chairs meetings of the steering committee, and so on.
The project leader is in charge of coordinating the project team. She oversees all of the network's actions and projects. She is in contact with the various stakeholders of the network (network members, patient organisations, other rare diseases networks, external service providers, etc.). Alongside the coordinator, she represents the network in dealings with institutions and with the Ministry of Health. She ensures budget monitoring for the network and collaborates in the compilation of official documents.
Contact : audrey.barbet@chu-lille.fr
An administrative assistant
The administrative assistant performs all the administrative tasks necessary for the proper functioning of the network. Her main responsibilities are: bookkeeping, order processing, managing the needs of the reference and competence centres and patient organisations, and supporting the team in organising the network’s projects.
Contact : virginie.godec@chu-lille.fr
Her work focuses on raising awareness among healthcare professionals about paediatric feeding disorders, improving the quality of life for patients affected by these disorders, supporting families, and leading innovative projects addressing these issues. She takes a particular interest in the latest scientific publications in the field to ensure that the FIMATHO network’s recommendations remain relevant to patients, families and professionals
Contact : charlotte.pereira@chu-lille.fr
Four regional liaison officers
The network's four liaison officers are based in different regions so that they can work closely with the network's stakeholders. Each is responsible for specific working groups within the network (oral feeding, transition from adolescence to adulthood, medico and social care, etc.).
Contacts:
Ile-de-France and Strasbourg: aurelie.coussaert@chu-lille.fr
North: rachel.pamart@chu-lille.fr
West/North-west: ariane.david@chu-lille.fr
South-east: marine.gonzalez@chu-lille.fr
A clinical research associates coordinator
The main role of the clinical research associate (CRA) coordinator is to coordinate and standardise BaMaRa coding within the FIMATHO network. She also works to ensure the quality of the data entered into BaMaRa. The CRA coordinator works closely with the BaMaRa CRA.
Contact: arcfimatho@chu-lille.fr - ioanna.meintani@chu-lille.fr
The main mission of the clinical research associate (CRA) of the FIMATHO network is to help set up the Banque Nationale des Maladies Rares (BNDMR) throughout the country. The CRA is the main interlocutor of the rare disease expert centres regarding the BNDMR. She works in close collaboration with the regional liaison officers and the CRA coordinator.
Contact: arcfimatho@chu-lille.fr
Team organisational chart
FIMATHO GOVERNANCE
Management committee
The management committee defines the network’s strategic focuses. It meets every two months. It is composed of coordinators from each reference centre, one representative from research laboratories, one representative from patient-support organisations and the network’s project manager. Committee members are elected for a five-year term.
Scientific committee
The scientific committee plays a consultative role on some projects. It is composed of coordinators from the reference and competence centres and of a representative from a learned society in the field. It meets twice a year.