The people who keep the association going every day.
The members who run the association.
President of the association
Mascot of the association
She tells her story in her book 20 ans pour pousser mon premier cri (in French).
A woman of heart, resilience and courage, Muriel puts her experience and commitment at the service of people living with Ehlers-Danlos syndrome. Her book Cinquante nuances de SED is now a valuable resource for better understanding the condition and breaking isolation.
Representatives, ambassadors and volunteers of the n’Cie.
The team gallery will be completed over time with the board and team members who wish to appear on the website.
They share their experience and give a voice to invisible illnesses on social media.
Extra-Ordinaires
Hypermobile EDS, HSD and invisible disability. She digs into studies, treatments and rights to explain them simply, and shares her own experience.
Une Minitech et sa micropipette
She is training in medical biology and shares sheets and tips to understand what happens in the lab: tubes, serum, plasma, bacteria…
Official partner
Words for invisible ills: one letter at a time, this project gives a voice to people living with an invisible illness.
The HEDS Index
Hypermobile EDS, POTS, MCAS, endometriosis, narcolepsy… She shares her medical journey, her symptoms and research.
A local contact near you, in France and abroad, to talk, organise Passport meet-ups and spread the word about the association locally.
EDS ambassador
Dijon, Besançon and their départements
Grenoble and the département
Béziers, the Hérault and La Réunion
Marseille and the département
Nice and the département
Partner association, our local contact in Toulouse
Would you like to bring the n’Cie to life in your area? I’d like to help
Represents the n’Cie in Germany
Represents the n’Cie in Sicily
Represents the n’Cie in Greece
Do you live abroad and would like to represent the n’Cie? I’d like to help
Interviews and awareness posters
Read the storiesStalls, crêpes, sharing on social media
Local contact, video editing, social media, graphic design, events: everyone according to their energy.
I’d like to help
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