Just arrived? Where to start?

Have you just been diagnosed, are you looking for answers or supporting a loved one? You don’t need to understand everything today. Simply start with what is useful to you right now.

Understand Prepare Observe Eating Getting support Stories

You don’t need to do everything today.

When you discover a chronic illness or symptoms become hard to understand, the amount of information available can quickly become overwhelming.

You can start with any step and come back to the others later.

There is no perfect path. There is yours.

Need help quickly?

In an emergency (France): 15 or 112. Our “I’m going to A&E” sheet (PDF, in French) ↗
To be listened to and guided: Maladies Rares Info Services, 0 800 40 40 43 (free, Monday to Friday, in France).

Six steps to find your way

Simply choose the step that best matches what you need today.

UNDERSTAND

Putting words to what is happening to you

Discover the main points about Ehlers-Danlos syndrome and gastroparesis, with accessible explanations.

Understanding EDS Living with EDS Understanding gastroparesis

PREPARE

Arriving better prepared for your appointments

A consultation can go by very quickly. Preparing your symptoms, treatments and questions helps you keep track of what matters.

Preparing an appointment

OBSERVE

Better understanding your symptoms

Noting certain changes can help spot patterns and pass on useful information to your care team.

Tracking your symptoms

EATING

Finding your bearings with food

Gastroparesis can make eating complicated. Find information on textures, smaller meals, ONS and the different forms of nutritional support.

Diet & tolerance Nutritional support

GETTING SUPPORT

Not facing it alone

A chronic illness is not only about medical appointments. Support, listening and connection with other people can matter too.

Discover the association Our events The n’Cie Passport Find a professional

SHARE & READ

Discovering other journeys

Every experience is different. Personal stories can help you feel less alone, put words to certain experiences or simply discover other journeys.

Read the stories

Simply start with what you need right now.

I want to understand EDS The main points about the syndrome → I want to understand gastroparesis Symptoms, how it works and care → I have an appointment soon Preparing your information and questions → I have difficulty eating Diet, textures and tolerance → I’m a loved one Understanding and supporting day to day → I need support Discover the association and its actions → I have a question Answers to frequently asked questions → I’m looking for a sheet to print Our practical guides in PDF → I’m looking for specific information All our resources in one place →

You can come back whenever you like.

You don’t need to read every page, fill in every document or understand everything right now.

Some periods simply call for finding one specific piece of information. Others make you want to understand the condition better or prepare for what comes next.

Use the website as a toolbox: take what is useful to you today and leave the rest for later.

Looking for something specific?

All our guides and resources, sorted by topic.

Discover all the resources