One of the more recent tasks of the rare diseases reference centres has been to implement patient therapeutic education (PTE) programmes for the specific purpose of adopting a multidisciplinary treatment policy with respect to those persons affected (patients, parents, caregivers).
PTE is a key asset for fostering positive momentum in terms of a sense of autonomy and experience-sharing among peers. These programmes help disseminate sound information on skills and best practice. They create opportunities for the enhancement of doctor-patient relationships.
The AnDDI-Raresnational network will be developing 4 PTE projects. They were submitted in 2020 in Burgundy Franche-Comté under the name "Les 4 fantastiques":
- The "Sens%Diag" pathway, for "undiagnosed" persons ;
- The "22 Ways Forward" path, for persons and caregivers involved with 22q11 deletion syndrome patients ;
- The "On the Road to Autonomy" pathway, for child-to-adult transition of persons with mild developmental intellectual disability (ID) disorders ;
- The "E...change of view pathway", on the perception of others in relation to aesthetic deformity in malformative syndromes, jointly developed with the MAGEC network.
The FHU TRANSLAD teams are intimately involved in the formulation of these PTE programmes, training 11 professionals of various vocations.