Care pathways vary widely, reflecting the heterogeneity of clinical profiles within the condition. There is no one-size-fits-all solution.

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Available options are multiple and depend on:

• The profile and needs of each patient

• The family's resources (time, finances, mobility, etc.)

• Access to healthcare and social support

• Medical prescriptions

• Decisions made by the MDPH (Maison Départementale pour les Personnes Handicapées — the French Departmental Office for Persons with Disabilities)

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Regarding adulthood and adult patients

Since the publication of the PNDS in January 2026, the transition to adulthood is now explicitly framed by official recommendations. The PNDS calls for:

• Continuity of follow-up into adulthood

• A coordinated transition between pediatric and adult teams

• The maintenance of a multidisciplinary approach tailored to evolving needs

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The situations observed among adult Vaillants are varied:

• Continued vocational studies

• Part-time professional activity

• Supported autonomy

• For some individuals, autonomy is not achievable; enhanced support is then put in place.

 

The association continues to collect testimonies and data on adulthood, in order to give greater visibility to these life paths, which remain poorly documented in the scientific literature.

 

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COMPLETE GUIDE — CARE PATHWAYS & MDPH — ALL AGES — AVAILABLE ON REQUEST (click on the underlined text to access the request form)

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