Privacy policy

Who is responsible for your data?

The association SED Gastroparésie N’Cie, based in Vitrolles (see the legal notice), is responsible for the data collected on this site. We only collect what is needed to answer your messages and run the members’ area.

• No medical data is stored by the website.
• Your data is never sold, rented or passed on.
• Only authorised board members have access to it, along with the technical providers listed below, solely to run the service.

Being a member is sensitive information

Our association is for people affected by EDS, gastroparesis and related conditions. Simply being a member may therefore hint at information about your health or that of a loved one.

That is why the membership list is handled with special care: it is only used for the life of the association, is never shared outside without your consent, and your name only appears on the site or our social media if you have agreed. This processing is permitted by the GDPR for associations, in respect of their members (Article 9(2)(d)).

Contact form

When you write to us, we receive your name, your email address, the subject you chose and your message. This information is used only to reply to you, with the consent you give by ticking the box on the form.

Messages are sent through the Formspree service (Formspree, Inc., United States), then received in the association’s mailbox. They are kept for a maximum of 12 months after our last exchange.

Please do not include detailed medical information in your message, and do not attach medical documents.

Member area

For each member, the site keeps:

• email address, first name, last name and town;
• communication preferences (newsletter, event emails);
• membership dates, amount and receipt;
• event registrations, including whether a companion is coming;
• Passeport n’Cie stamps and discount codes awarded.

This information is used to manage your membership and give you access to members-only services. It is kept for the duration of your membership, then for no more than 3 years after it ends before being deleted, except for items the law requires us to keep longer (accounting records).

You log in with a link sent by email, without a password: it is valid for 20 minutes and can only be used once. The site only keeps an encrypted fingerprint of these links and of sessions, never the link itself.

Why are we allowed to use it?

Answering your messages

Your consent, given in the form.

Managing membership, events and the Passeport

Performance of your membership, which is a commitment between you and the association.

Newsletter

Your consent, for members only and changeable at any time in “My membership”.

Site security

The association’s legitimate interest in protecting accounts (limits on link requests and code attempts).

Who else processes your data?

Cloudflare

Hosting of the site and of the members’ database.

Resend

Sending login emails for the members’ area.

Formspree

Forwarding messages from the contact form.

HelloAsso

Payment of memberships, donations and shop purchases, under its own privacy rules.

Cloudflare, Resend and Formspree are US companies. Data transfers to the United States are covered by the safeguards provided by the GDPR (EU–US Data Privacy Framework or standard contractual clauses).

The site also contains links to Instagram: by following them, you leave our site and Instagram’s rules apply. Fonts are hosted directly on the site: no request is made to Google Fonts.

Cookies and trackers

The website uses no advertising cookies, no analytics tools and no audience tracking.

Only one cookie is set, and only when a member logs in to their area: it keeps them logged in for a maximum of 30 days and is deleted when they log out. As it is strictly necessary for the service, it does not require consent.

Practical tools and representative cards

The site’s practical tools work directly in your browser, without sending us anything:

• the health card in the teens’ space is created on your device: the information entered is neither sent nor saved;
• the ticked boxes of the checklist in the teens’ space are kept only in your browser’s memory, so you can find them on your next visit. The “Untick all” button erases them;
• the children’s weather of the day and the teens’ energy level are not saved.

For people who officially represent the association, the site keeps their first name, surname, role and the expiry date of their card. This information is displayed when a card is checked on the “Check a representative” page, to prove that it is genuine. It is deleted at the person’s request or when they stop representing the association.

Stories

The testimonials listed on the site link to existing Instagram posts, shared with the consent of the people concerned. The site does not collect the health data contained in these testimonials.

You can ask us at any time to remove a link to your testimonial: we will do so as soon as possible.

If you are under 15

To write to us, become a member or register for an event, one of your parents (or the person with parental responsibility) must give their consent.

Your rights and how to exercise them

At any time, you can:

• access your data and get a copy of it;
• have it corrected or deleted;
• object to its use or restrict it;
• receive it in a reusable format (portability);
• withdraw your consent (newsletter, contact);
• give instructions on what should happen to your data after your death.

Write to us at the address below: we reply within one month at most. We may ask you to confirm your identity, for example by writing from the email address used for your membership.

If you believe your rights are not being respected, you can lodge a complaint with the CNIL (French data protection authority).

Contact email address

[email protected]

Data controller

SED Gastroparésie N’Cie

Changes to this policy

This policy may be changed when new features are added to the website or when the way the association works changes.

Last updated: 2 November 2026.