On the occasion of the international rare diseases Day, which took place on Monday 28 February 2022, the rare disease expertise platform and the communication department of the AP-HP.Centre-Université de Paris university hospital group organized a webinar on therapeutic education in rare diseases.
We would like to warmly thank all the people who participated and attended this webinar.
These testimonies from health professionals, patients, caregivers and members of associations can be seen in the video below.
Webinar program
Introduction
- Dr Cécile Godot, physician in charge of the transverse therapeutic education unit | Necker-Enfants malades hospital
Family support for patients with systemic scleroderma: caregivers at the heart of a research project (06:25)
- Dr Janine-Sophie Giraudet, rheumatologist – reference center for systemic autoimmune diseases | Cochin hospital
Socially acceptable toilet training for children with rare anorectal and pelvic malformations : video as a creative tool for children (17:25)
- Célia Cardoso, president of the Tintamarre association
- Lucile Cardoso, patient
Therapeutic education of children on anticoagulant (AVK) drugs and their parents : co-construction of a digital platform for TPE (28:35)
- Dr Fanny Bajolle, pediatric cardiologist – reference center for complex congenital heart defects (M3C) | Necker-Enfants malades hospital
- Aurélie Chemineau, mother of a child on AVK and member of the « Petit cœur de beurre » association
Training in therapeutic education for health professionals and associative members: the interest of being trained together, caregivers and associatives (43:40)
- Dr Christophe Orssaud, head of the constitutive site of the reference center for rare diseases in ophthalmology (OPHTARA) | Georges-Pompidou European hospital
- Nolwen Le Floch, President of the Wolfram syndrome association
Conclusion (55:20)
- Dr Cécile Godot, physician in charge of the transverse therapeutic education unit | Necker-Enfants malades hospital