Our flagship initiative, the "rare diseases HQ" project, represents a bold and innovative response to a crucial need. It involves creating a care facility operational 24 hours a day, merging the best practices of a Specialised Education Institute (IME) with the services of a rehabilitation centre.
They support the project of the HQ for rare diseases
"Also an opportunity to discover this wonderful association: Margot pour la vie, rare diseases. It fulfils numerous missions of listening, information, support and carries a major project of the association."
"Et parce qu’une course ne se gagne pas sans soutien : bravo à l'association Margot pour la vie aux commandes des trois stands de ravitaillements. Une mobilisation exemplaire, à la fois logistique et humaine."
"A big thank you to Margot pour la vie, rare diseases for their inspiring testimony and for reminding us of the importance of standing by their side."
Because putting words to pain is the first step towards well-being. Offering a caring and non-judgmental space for patients and their loved ones. We place emotional well-being at the heart of our exchanges to help everyone face daily challenges with more serenity.
Taking rare diseases out of the shadows to illuminate our fight. Raising awareness among the general public and challenging public authorities about the reality of little-known conditions. By sharing our knowledge, we break isolation and mobilise awareness to make a difference.
From the human to the administrative, being your compass in the face of disease. Concretely supporting families in their procedures, particularly for access to care in Europe. We provide moral and logistical support to turn administrative obstacles into concrete care solutions.
Building a refuge: the rare diseases HQ, a home for all. Creating a unique and adapted care facility, designed as a true headquarters. A living and respite space dedicated to patients and their carers to come together, help each other and recharge together.