HELP
Supporting families every day. We provide concrete help to parents and children facing medical odyssey.
Let's build together the first HQ for rare diseases.
Because no family should face the odyssey alone, we are creating in Reims a unique living space in France. A refuge of care and respite to transform, 24/7 and 365 days a year, isolation into solidarity.
A promise born from a fight, a strength serving everyone.
Faced with the medical unknown, we founded Margot Pour la Vie in 2018.
Our daughter Margot inspired us with a mission: to support families, caregivers and patients facing a rare disease.
Every day, we work to bring them listening, comfort and well-being.
We create connections. Through events, conferences and partnerships,
we give a voice to these too often invisible diseases. Because understanding better means supporting better.
Our project: the Rare Disease HQ. A unique place in France and Europe to welcome children and their families.
Together, with professionals and volunteers, we will offer support, sharing and hope with well-being as our guiding thread
Our focus areas
ACT
Making the HQ project a reality. We don't just observe the gaps, we build solutions.
RAISE AWARENESS
Carrying the voice of the 'undiagnosed'. Taking rare diseases out of the shadows is vital. We inform the public and challenge institutions.
DEVELOP
Innovating for tomorrow's health. We create bridges between families, healthcare professionals and medico-social structures.
They support us
'A common ambition, carried by committed partners.' The strength of our association relies on the trust of those who support us. Companies, institutions and foundations: they share our values and give us the means to act concretely to transform the daily lives of families.
