Transition from adolescence to adulthood

The transition is an intentional, progressive and coordinated process, helping a young patient with a rare and/or chronic disease move from a paediatric care service to a service for adults.

The main challenges for treatment are to prevent breaks in the teen's care pathway and to ensure continuity in their social and medical care, despite the change in structure. 

The transition is a key stage in the care pathway of young patients, which often means many questions and worries from both the teens and their parents. It may sometimes be complicated to live through, especially owing to the ambivalence between the teen's desire for autonomy and their dependence (on parents or caretakers) due to the disease.

To help patients and their families better understand and prepare for the transition from paediatric to adult care, the FIMATHO network has been organising ‘regional information and discussion days on the adolescent-to-adult transition’ since 2018.

Held at voluntary university hospitals across France, these events are aimed at adolescents (aged 15–19) with rare diseases who have not yet made the transition to adult care, as well as their parents.

Initially reserved for patients in the FIMATHO network, these days are now open to all patients with rare diseases. Indeed, since 2020, this project has become cross-network. It remains, however, funded and led by the FIMATHO network.

The objectives are:

• to discuss how to prepare for and anticipate the transition;
• to explain the key differences between children’s hospitals and adult hospitals;
• to provide information to adolescents on becoming independent;
• to help parents understand their child’s transition to independence;
• to facilitate discussions in peer workshops where parents and adolescents can express their feelings and questions regarding this important stage.

These days cover general themes relating to adolescence and transition and are not specific to any particular medical condition.

The next cross-network adolescent-to-adult transition day will take place in Orléans on 6 June 2026 – further information here.

Designed as a comprehensive downloadable package, the transition kit is intended for paediatricians or doctors working in adult services who wish to support their patients through the transition to adult services or to welcome them into these services.

The transition kit contains :

• The FIMATHO Transition Recommendations
• The FIMATHO "Towards adult services" information sheet
• The FIMATHO "Good2Go Questionnaire"
• The FIMATHO "Transition follow-up" sheet
• FIMATHO "Preparing for Transfer" form
• FIMATHO "Arrival in an adult ward" form

To download the transition kit or find out more, click here

FRANCHIR is a podcast produced by Double Monde, exploring a crucial stage in the life of a young patient living with a rare and/or chronic condition.

The project is the result of a collaboration between the youth committee of the Ad’Venir platform (Com’Aja) and the rare diseases youth committee, which meet periodically at the Suite Necker.

Comprising five episodes, the first season of Franchir takes us (accompanied by Lola, a journalist) to meet young patients with rare chronic conditions, their parents, paediatricians and adult doctors. The second season, meanwhile, focuses on rare diseases and self-esteem. Two episodes of the season are dedicated to rare diseases within the FIMATHO network and feature healthcare professionals and patients from its network:

• Episode 5 features Juliette, a patient with exocrine pancreatic insufficiency, who talks about how her condition has affected both her diet and her self-image.

• Episode 6 features Dr Niasha Michot, a nutritionist specialising in malnutrition and artificial nutrition, and Ms Clémence Mercier, a nurse, both members of the Transversal Nutrition Unit at Nancy University Hospital. They share their perspectives as healthcare professionals on the experiences of patients living with artificial nutrition.

Franchir is available to listen to on:

Apple Podcasts, Deezer, Spotify, Acast (season 1) and YouTube (season 1).

Any questions about the podcast? Email us at: franchir@transitionmaladiesrares.com