Français
English
Italiano
Deutsch
EspañolResources
Pages, guides and contacts on EDS, gastroparesis, the care pathway and daily life.
Other conditions
-
Endometriosis
Symptoms, diagnosis, care and link with EDS.
-
Mast cell activation syndrome
Flare-ups, triggers, diagnosis and treatments of MCAS.
-
Autism and ADHD
Characteristics, diagnosis, support and link with EDS.
-
POTS and dysautonomia
Fast heart rate when standing, diagnosis and everyday measures.
-
Intestinal dysmotility
When the bowel no longer moves its contents along properly.
-
All conditions and disorders
All our pages by condition or disorder.
Daily life
-
Tracking your symptoms
Observing your symptoms, how they change and their impact, to better prepare your appointments.
-
Preparing for your appointment
A method to arrive prepared for a consultation, whatever the condition.
-
Practical guides
Our sheets to read, print or download for daily life and the care pathway.
-
Information for loved ones
Helping loved ones understand EDS, gastroparesis and the daily life of the people affected.
-
Frequently asked questions
Answers to the most frequent questions about the conditions, the care pathway and the association.
-
Rights and procedures
MDPH, AAH, mobility card, RQTH, ALD, work and carers (in France).
-
Children and teens
Early signs, care pathway, school (PAI, PPS, exams) and support for parents.
-
Glossary
The medical and administrative words you meet along the way, explained simply.
Find a professional
The non-vascular EDS centres and the professionals listed by the association to guide you in your care pathway.
Associations & organisations
Recognised organisations to complement the information provided by the association.
-
Maladies Rares Info Services ↗
French national helpline for listening, information and guidance. Free number: 0 800 40 40 43 (Monday to Friday).
-
OSCAR health network ↗
French national network for rare diseases of bone, calcium and cartilage, which includes the non-vascular EDS centres.
-
UNSED ↗
Union nationale des syndromes d’Ehlers-Danlos: a French patient association approved by the Ministry of Health.
-
AFSED ↗
French Ehlers-Danlos syndromes association: information, mutual support and help for patients and their loved ones (in French).
-
Santé.fr ↗
The French public health information website: a page for the general public on Ehlers-Danlos syndromes.
-
Orphanet ↗
The reference portal on rare diseases: information, expert centres and associations.
-
The Ehlers-Danlos Society ↗
International resources (in English) on Ehlers-Danlos syndromes and hypermobility spectrum disorders.
-
EndoFrance ↗
French association fighting endometriosis: information, support and awareness campaigns (in French).
-
Autisme Info Service ↗
Free national helpline for listening and guidance (in French): 0 800 71 40 40.
-
ENDOmind ↗
Patient association: information, awareness and support around endometriosis (in French).
-
La Vie par un Fil ↗
Association of patients living with artificial nutrition (enteral or parenteral) and their loved ones (in French).
-
NIDDK ↗
Medical resources (in English) from the National Institute of Diabetes and Digestive and Kidney Diseases.
-
Osmotility ↗
Swiss association for rare digestive motility disorders (gastroparesis, CIPO), with information on enteral and parenteral nutrition.
-
Vivre avec le syndrome de POTS (Living with POTS) ↗
Association dedicated to postural orthostatic tachycardia syndrome: awareness, information, video meet-ups and phone support.
-
Espoir de Noisette ↗
Support for people with a vascular compression syndrome (Nutcracker, May-Thurner, Wilkie, Dunbar), which often causes abdominal pain and digestive problems.
-
Handicap+ ↗
Association supporting people with visible or invisible disabilities throughout France: a legal service open to all, support groups and a community radio.
Do you know a useful resource?
Suggest a resource, a document or a reference: the association will look at it to enrich this section.