Living with a rare disease

LIVING WITH A RARE DISEASE

RARE DISEASES: A MILESTONE FOR EVERYONE

– developing information on rare diseases
– gaining a better understanding of the existing mechanisms for dealing with them

These resources are presented in the form of an interactive health and life journey

http://parcourssantevie.maladiesraresinfo.org/index.html

The ORPHANET booklet “Living with a rare disease in France” presents the assistance (human, financial, and technical) and services available to people with rare diseases (whether disabled or not) and their loved ones, enabling them to receive support and participate in society on an equal footing with able-bodied people.

This booklet was designed by a multidisciplinary editorial committee composed of representatives from the Directorate General for Healthcare Provision (DGOS), the Directorate General for Social Cohesion (DGCS), the Directorate General for School Education (DGESCO), the National Institute for Training and Research in Education for Young People with Disabilities and Adapted Education (Inshea), the Rare Diseases Alliance, Rare Diseases Info Services, and the French Association Against Myopathies (AFM-Telethon). It was updated in December 2024.

Download the ORPHANET booklet “Living with a rare disease in France”