A poster presented by the French Pulmonary Hypertension association HTaPFrance was displayed at the RARE 2025 Congress on October 8, 2025– see photo below with HTaPFrance President Maggy Surace. The poster presents data from a questionnaire that was sent to patients’ families and to the patients. It summarizes the section “Understanding the disease at the time of the child’s diagnosis by the child.
The poster was created with the help of 2 pediatric cardiologists – Dr Yves DULAC, from the Centre de Compétence PulmoTension de l’HTP, Hôpital d’enfants, Toulouse, and Pr Damien BONNET, from the Centre de Référence Constitutif PulmoTension de l’HTP, Hôpital Necker, Paris.
The poster highlights:
- The importance of explaining the disease to children using understandable terms and even complementary modes of expression (drawings, stories, etc.),
- The vital role of patient associations in explaining the disease to children and their families,
- The need for simple documentation adapted to the child’s age.
The HTaPFrance team is currently working on these materials and aims to release a booklet for young children in early 2026.
