On the occasion of the 15th International Rare Disease Day, the rare disease expertise platform of the AP-HP university hospital group. Center – University of Paris proposed to all the reference centers to produce posters explaining the therapeutic patient education (TPE) programs implemented for 2 years. Regularly new posters will be published on this site.

This poster is dedicated to the therapeutic education program of children treated with non-invasive ventilation (NIV). This program was set up with the help of CRANIOST, MAFACE, MALO, SPRATON, MaMEA, Prader-Willi, RespiRare, MOC, cystic fibrosis and neuromuscular diseases reference centers.

General public summary :
NIV involves blowing air into the lungs to improve breathing. It is done using a machine called a respirator and a small mask placed on the nose called an interface. Many children followed at Necker for rare diseases need long-term NIV. The NIV and child sleep unit works in collaboration with the other specialized pediatric departments of Necker and home care providers trained in pediatrics to ensure individualized and optimal care for the patient. Our TPE program aims to learn and support the child and his family in order to live as well as possible with NIV at home on a daily basis.