A call for projects for Therapeutic Patient Education will be launched bu the Direction Générale de l'Offre de Soins (General Directorate for Healthcare Provision, DGOS) in the second quarter of 2026, in conjunction with the 4th National Plan for Rare Diseases 2025-2030.
If you have a project or an idea, do not hesitate to contact Rachel PAMART, the network's TPE liaison officer: rachel.pamart@chu-lille.fr
TPE PROGRAMMES IN THE FIMATHO EXPERT CENTRES
The TPE directory lists all the Therapeutic Patient Education programmes currently available at FIMATHO rare disease centres in France, which patients within the network can join.
The directory allows users to search for an ETP programme by theme, by region, or by target audience (children/teenagers/adults).
THE STIMULAB PLATFORM
FIMATHO is collaborating with STIMULAB to offer its interested reference and competence centres access to the secure Stimulab digital platform for the digitisation of TPE programmes. This e-TPE platform provides access to a range of features:
- Personalised digital teaching and learning modules for face-to-face or remote sessions (quizzes, whiteboard, picture cards, Barrow cards, etc.);
- Video conferencing and remote workshop facilitation, with no installation required;
- Coordination of TPE programmes, a collaborative and sharing space for professionals, and reporting for the ARS.
To discover all features, click here.
Our aim is to support teams running ETP programmes within the network in digitalise their programmes, enabling remote delivery: please do not hesitate to contact us at fimatho@chu-lille.fr with any enquiries.
APPEL À PROJETS
As part of Priority 7, ‘Improving the care pathway’, of the 3rd National Plan for Rare Diseases (PNMR), the Direction Générale de l'Offre de Soins (DGOS) published two calls for projects in 2019 and 2020 for the development, updating or roll-out to other regions of Therapeutic Patient Education programmes for rare diseases. In 2023, the FIMATHO network launched a special call for projects dedicated to TPE, aimed at supporting the development of new programmes or the implementation of existing ones, led by the network’s reference centres or centres of expertise.
In total, 14 rare disease TPE projects submitted by Reference (CRMRs) or Competence (CCMRs) centres within the network were selected and implemented.
Laureate of the 2019 DGOS call for projects:
- Living better with a rare paediatric gastrointestinal condition – led by Dr COOPMAN (Lille University Hospital team)
Laureate of the 2020 DGOS call for projects:
- Therapeutic education for patients with intestinal failure receiving home parenteral nutrition – led by Dr Marotte (HCL team);
- Therapeutic education for paediatric feeding disorders – led by Ms Lecoufle (Lille University Hospital team);
- ETHIIC : A therapeutic education programme for patients with mild chronic intestinal failure – led by Prof. Quilliot (Nancy University Hospital team);
- Rare digestive diseases, intestinal failure: towards psychosocial independence – led by Prof. Joly (AP-HP/Beaujon Hospital team) ;
- Development of the digital version of the ‘Les cartes de l’imprévu’ tool for therapeutic education for parents and carers of young children and adolescents on long-term parenteral nutrition – led by Dr Dugelay (Robert Debré Hospital team, AP-HP) ;
Laureate of the 2023 FIMATHO TPE call for projects:
- TPE for patients with chronic intestinal failure receiving long-term parenteral nutrition at home – MaRDi Adult Reference Centre at La Timone Children’s Hospital, APHM;
- ETAP: therapeutic education programme for children and adolescents with feeding disorders and their carers – MaRDi Competence Centre at HPR Bullion;
- Therapeutic Education Programme for children and adolescents with a rare digestive disorder who are currently receiving or have previously received home parenteral nutrition – MaRDi Peadiatric Reference Centre at La Timone Children’s Hospital, APHM;
- ‘Living better with my digestive stoma’ for children and adolescents with an ileostomy or colostomy – MaRDi Competence Centre at Trousseau Hospital, APHP;
- ‘My body… quite a story’ – Congenital Diaphragmatic Hernia Reference Centre at La Timone Children’s Hospital, APHM;
- Enteral nutrition in the “Rare Digestive Diseases” programme – MaRDi Reference Centre at Lille University Hospital;
- TAP’Papille – Congenital Diaphragmatic Hernia Competence Centre at Bicêtre Hospital, APHP;
- Management of paediatric eating disorders – MaRDi Competence Centre at Orléans University Hospital.