English
Italiano
EspañolThe beginning
Birth of « SED & Gastroparésie — Du Sud au Nord » (From South to North)
In France and internationally, building connections
SED Gastroparésie N’Cie was born of a wish to fight isolation, to inform and to support people affected by Ehlers-Danlos syndrome, gastroparesis and associated conditions.
Because no one should face illness alone
A chronic illness that is still little known often means isolation, misunderstanding and a complicated path.
SED Gastroparésie N’Cie was born from a wish to create a space where patients, loved ones and carers can find information, share their experiences and build connections, all over France.
The association also wants to raise awareness of Ehlers-Danlos syndrome, gastroparesis and associated conditions.
While several French associations already support people with EDS, gastroparesis, dysautonomia and the related digestive disorders had almost no dedicated patient association in France. The n’Cie was also created to fill this gap.
A new name
The n’Cie: “and Company”, because we move forward together, beyond EDS.
The public launch
Website, social media and the n’Cie Passport open to everyone.
Our values
Kindness
Everyone’s path is respected.
Loyalty
A charter shared by all members.
Closeness
Local contacts in several French departments.
Openness
EDS, gastroparesis and all invisible illnesses.
Our missions
Making our voices heard and making sure no one fights an illness alone. We inform, raise awareness and connect patients, families and healthcare professionals.
Breaking isolation
Creating spaces for sharing so that people affected feel less alone with their illness.
Inform
Making information about EDS, gastroparesis and related conditions more accessible.
Support
Standing by patients, and also by the loved ones and carers who share their daily life.
Build connections
Growing a community and bringing people together in France and internationally.
The team
The people who keep SED Gastroparésie N’Cie going every day.
President
Lisa & Vivaldi
Representative for the Bouches-du-RhônePresident of the association
Mascot of the association
She tells her story in her book 20 ans pour pousser mon premier cri (in French).
Vice-president of the association
Thierry
Representative for the Hérault and La Réunion
Treasurer of the association
Jessica
Representative for the Isère
Secretary of the association
Valentina
Representative for the Isère
The association’s representative for the North
Anne Charlotte
Representative for the Côte-d’Or and the Doubs
EDS ambassador
Muriel KC
Representative for the Paris regionA 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.
Near you
The association is growing in France and beyond. Our local contacts and the places where n’Cie is already present.
Our local contacts
Paris region
Muriel KC
EDS ambassador
Côte-d’Or (21) · Doubs (25)
Anne Charlotte
Dijon, Besançon and their départements
Isère (38)
Jessica and Valentina
Grenoble and the département
Hérault (34) · La Réunion (974)
Thierry
Béziers, the Hérault and La Réunion
Bouches-du-Rhône (13)
Lisa and Laurine
Marseille and the département
Alpes-Maritimes (06)
Jess
Nice and the département
Toulouse · Occitanie
Sed’Occ France
Partner association, our local contact in Toulouse
Our cities
- Lille
- Paris
- Brest
- Dijon
- Besançon
- Lyon
- Grenoble
- Toulouse
- Béziers
- Marseille
- Nice
Would you like to bring the n’Cie to life in your area? Contact us
Our representatives abroad
Germany
Jessica
Represents the n’Cie in Germany
Sicily (Italy)
Valentina
Represents the n’Cie in Sicily
Greece
Lisa
Represents the n’Cie in Greece
Do you live abroad and would like to represent the n’Cie? Contact us
An association built on sharing
Our projects start from the needs of the people affected and of the community.
Sharing experiences
Giving patients, loved ones and carers the chance to talk about their experiences and their daily lives.
Gathering information and resources
Bringing together useful information, resources and references to professionals or centres.
Making room for personal stories
Making heard what the people affected live through.
Creating solidarity projects and meetings
Organising meet-ups and activities to get together and help each other.
A space that grows with us
See the resources
Our resources
Information on EDS, gastroparesis and associated conditions.
French at heart, open to the world
EDS is a rare disease: answers will come from international research. We want to work with institutes and scientific teams abroad, and carry the voice of French patients there.
Germany
Took part in a medical and scientific study by the Spiegel Institut (2026).
France
Took part in the ComPaRe study (2026).
United States
Took part in an international project by Sky Consulting (2026).
Take part
Share calls for study participants with our members, in the members’ area and on our social media, after checking that they are serious.
Translate
Making scientific advances accessible in French.
Represent
Bringing the experience of French patients to international conferences and networks.
Collaborate
Building lasting partnerships with institutes abroad.
Be part of the adventure
Join and support the association
By becoming a member or visiting our charity shop, you support our actions and future projects.
Follow our news on
@sed_gastroparesie_dusud_aunord