Rare Disease Information Sheets

Living with a rare disease can lead to many questions about social rights, available support, and administrative procedures. Our information sheets (which are currently only available in French) have been developed to help you navigate these situations by providing clear, practical guidance.

Each sheet addresses specific circumstances, outlining the steps to follow, the services or professionals who can help, and the resources that may be available to you. Developed by our team of social workers and psychologists, these sheets are based on the questions and challenges most frequently encountered by individuals and families affected by a rare disease.

The information contained in these documents is provided for informational purposes only and does not constitute legal advice. It reflects the regulations in force at the time of publication and may be subject to change. Our association cannot be held responsible for any decisions made based on this information.