Privacy policy

Who is responsible for your data

The Amyloidosis Alliance, a non-profit association governed by the French law of 1 July 1901, whose registered office is at 13 rue Raymond Losserand, 75014 Paris, France, is the controller of the personal data collected through this website. Our full details are given in our legal notices.

For any question about this policy or about your data, write to contact@amyloidosisalliance.org or to the postal address above.

What this policy covers

This policy applies to this website only. The websites of our member organizations, of our partners and of the institutions we link to have their own policies, and we have no control over them.

Three principles govern everything below. Apart from audience statistics, we only collect what you choose to give us through a form. We never sell your data and never pass it to advertisers. This website sets no advertising cookie. It does measure its audience with Google Analytics, as explained below.

When you write to us

Four forms let you contact us. Each one sends us an email and nothing else: your message is not stored in a database on this website.

• Contact us: your name, email address, subject and message.
• Join us: your name, email address, organization, country, website and message.
• Organise your own event: your name, email address, organization, country, type of event, date and message.
• Press room: your name, email address, media outlet, type of media, country, deadline and message.

Why: to answer you, and to follow up on membership, event and press requests. Legal basis: your consent, given by ticking the box before you send the form. How long: three years after our last exchange with you.

Please do not send us medical details about yourself or about someone else through these forms. If you do, that information will be deleted once your request has been dealt with.

When you share your story

The Amylostory form invites you to tell us what living with amyloidosis means for you. A story of this kind says something about your health, or about the health of someone close to you, and health data is given special protection under Article 9 of the GDPR. We therefore treat it with particular care.

• What we collect: your first name, your last name if you give it, your email address, your country, the title of your story, the story itself, and a photograph if you choose to send one.
• Why: to publish your story on this website and in the World Amyloidosis Day campaign, so that other patients and their families recognise themselves in it.
• Legal basis: your explicit consent, given by ticking the box before you send the form. Your photograph is published only if you also tick the separate box giving permission to use your image.
• What is published: your first name, your last name if you gave it, your country, the title and the text of your story, and your photograph if you allowed it. Your email address is never published.
• How long: your story stays online until you ask us to take it down. The email address and the original message are kept for three years after publication, then deleted.

You can change your mind at any time. Write to contact@amyloidosisalliance.org and we will remove your story from the website. Please bear in mind that a page that has been online may remain for some time in search engine caches, and that anyone may have copied or shared it while it was published: we can remove the page, we cannot undo its circulation.

If the story is that of a person under the age of 15, it must be sent by the holder of parental authority, or with their agreement.

When you subscribe to our newsletter

The subscription form asks for your email address and nothing else. Alongside it we record the date and time of your subscription, your IP address, the page you subscribed from and the exact wording of the consent sentence you agreed to.

That last set of items is not there to follow you around. The law requires us to be able to prove that you consented, and this is the proof. It is never used for anything else.

• Why: to send you our news on amyloidosis research, events and patient advocacy.
• Legal basis: your consent, given by ticking the box before you subscribe.
• Where it is stored: in the database of this website. Your address is not sent to any emailing company.
• How long: until you unsubscribe. The proof of consent is kept for three years after that, then deleted.

You can unsubscribe at any time using the link at the bottom of each of our emails, or by writing to contact@amyloidosisalliance.org. Unsubscribing takes nothing else away from you and costs nothing.

What is recorded automatically

Like every website, this one runs on a server that keeps technical logs: the IP address of the visitor, the date and time, the page requested and the browser used. These logs exist to keep the site running and to detect attacks. Legal basis: our legitimate interest in the security of the website. How long: one year.

Audience measurement

To understand how this website is used, we measure its audience with Google Analytics, a service provided by Google Ireland Limited. It records the pages you view, how you arrived on the site, how long you stay, the type of device and browser you use, and your approximate location (country and city). Google Analytics does not store your full IP address.

We only look at these figures as overall statistics, to see which pages are useful and to improve the site. We do not use them to identify you, and we do not share them with advertisers. Legal basis: our legitimate interest in understanding and improving our website. How long: up to 14 months, after which Google deletes the detailed data.

You can refuse this measurement at any time by blocking cookies in your browser settings, or by installing the Google Analytics opt-out browser add-on.

Cookies and browser storage

This website sets no advertising cookie. It does set the audience measurement cookies of Google Analytics (_ga and _ga_ followed by an identifier), which tell one visit from another. They last up to two years, and you can delete or block them at any time in your browser settings.

Your browser does store two display preferences, on your device only. The text size you choose with the A- and A+ buttons, so that the site opens at your size on every page. And the fact that the newsletter invitation has already been shown to you, so that it does not come back at every visit. Neither is sent to us, neither can be read by us, and clearing your browsing data removes both.

A technical cookie is set only for the members of our team when they log in to administer the website.

Third-party services

This website is built to call as few outside services as possible. Images, maps, video thumbnails and the typeface itself are served from our own server. Three exceptions remain, and here they are.

• Google Analytics. Every page loads Google’s audience measurement script, which sets the cookies described above and sends Google the information listed under “Audience measurement”.
• OpenStreetMap. On the members page, the map is drawn with tiles loaded from the servers of the OpenStreetMap Foundation, which therefore receive your IP address when the map appears.
• YouTube. Videos are shown as still images stored on our own server. Nothing is requested from YouTube and no YouTube cookie is set until you click to play. From that moment on, Google’s own privacy policy applies.

The clinical trial information published on this site comes from the ClinicalTrials.gov register. It is fetched by our server, not by your browser: nothing about you reaches that register. The links to our social media accounts are ordinary links, with no widget and no tracking pixel: nothing is sent to those platforms unless you click.

Who can see your data

Inside the association, only the people who need it in order to answer you or to run the newsletter. Outside, our hosting provider, OVH SAS, which stores the website and its database on our behalf and acts on our instructions.

Your data is never sold, never rented and never passed to advertisers. It stays in the European Union, with one exception: Google may process audience measurement data in the United States, under the EU-US Data Privacy Framework to which it is certified.

Your rights

Under the General Data Protection Regulation and the French Data Protection Act, you have the right to obtain a copy of your data, to have it corrected, to have it erased, to restrict or object to its use, to receive it in a portable format, and to give instructions on what should happen to it after your death.

Where we rely on your consent, you can withdraw it at any time. Withdrawing your consent does not affect what was done before you withdrew it.

To exercise any of these rights, write to contact@amyloidosisalliance.org or to our postal address. We answer within one month. If there is a genuine doubt about who is asking, we may ask you for proof of identity before acting, precisely so that nobody else can act in your name.

If you believe your rights are not being respected, you can lodge a complaint with the French data protection authority: CNIL, 3 place de Fontenoy, TSA 80715, 75334 Paris Cedex 07, www.cnil.fr.

Changes to this policy

This policy may change as the website changes. The date below tells you which version you are reading. Any change that affects you directly will be announced on this page.

Last updated on 22 September 2026.