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HIBD Horizon

Part 3 · Living well with IBD · 15/22

Your rights and everyday life

What exists in France to make life with IBD easier, and who to turn to.

Your rights (in France)

ALD: care covered at 100%

In France, Crohn's disease and ulcerative colitis are on the list of ALD (affections de longue durée, long-term conditions). Your GP makes the application: care related to your IBD is then covered at 100% of the Sécurité sociale (French national health insurance) rate (excluding extra fees charged above that rate and the fixed patient deductibles known as franchises).

RQTH: protecting your job

The RQTH (recognition as a disabled worker), applied for through the MDPH (the local disability office), gives you the right to adjustments: working hours, working from home, a desk near the toilets. Nobody is obliged to show it to their employer.

Borrowing to buy a home

Since 2022, there is no health questionnaire for a home loan of less than €200,000 per person, repaid before age 60. Above that, the AERAS agreement helps you get insurance.

Children and teenagers: the PAI

The PAI (projet d'accueil individualisé, an individual care plan), signed with the school, allows a child, for example, to go to the toilet without asking or to take a treatment.

The social worker

At the hospital or the town hall: they help with sick leave, therapeutic part-time work, an invalidity pension or the AAH (allowance for disabled adults), depending on your situation.

Everyday life

Travelling

Medicines in your cabin bag, with the prescription (names of the active substances) and a certificate for the pens.
Cool bag for biologics that must be kept cold.
European Health Insurance Card or travel insurance.
On an immunosuppressant, no live vaccines (yellow fever): see your doctor 2 to 3 months before a long trip.

At work

The occupational health doctor is bound by confidentiality: they can suggest adjustments without telling your employer everything.
Therapeutic part-time work lets you return gently after a flare.

Toilets

The afa “Urgence toilettes” (toilet emergency) card helps you get access to toilets in shops and public places. It is not yet legally binding: afa is campaigning for an official card.
The “Où sont les toilettes ?” (Where are the toilets?) app to find them near you.

You are not alone

afa Crohn RCH France

The French national association for people with IBD, officially recognised as being of public benefit. It supports patients and their loved ones:

MICI Infos helpline
Social, legal and dietary advice sessions
Guidance on psychological support and working life
Self-help groups: young people, parents, people with a stoma
MICI Connect platform and health diary

afa.asso.fr

Expert centres at university hospitals (CHU)

Don't hesitate to ask for an opinion at an IBD expert centre in a CHU (French university hospital), especially if:

one treatment after another fails;
surgery is being considered;
you are planning a pregnancy;
you want to take part in a clinical trial.

Your gastro or your GP can refer you. Asking for a second opinion is your right.