Privacy policy

This website is hosted, maintained and developed by some of the staff at the Sorbonne University – Pitié Salpêtrière Hospital – Assistance Public Hopitaux de Paris who work on this project.

This page explains when and why we collect personal information about people who visit and interact with our website, how we use it and how we keep it secure.

We take great care with any information we receive from you and are constantly looking at ways we can improve what we do so we may change the content on this page from time to time. Please check this page occasionally to ensure that you’re happy with any changes. By using our website, you’re agreeing to be bound by our policy.

Who are we?

As previously mentioned some of the staff who work at the Pitié Salpêtrière Hospital look after this website, its content and send out the newsletter. We are physically located at Intitut de Myologie 47-83, Bd de l’Hôpital 75013 Paris – France.

How do we collect information from you?

We obtain information about you, for example, when you contact us to tell us about an event or a job vacancy you would like advertising or if you sign up to receive one of our monthly newsletters, we need this information to be able to interact with you.

What type of information is collected from you?

The personal information we collect includes your name, address, email address, IP address, and information regarding what pages are accessed and when.

How is your information used?

We use (process) your information to:

  • to send you our monthly newsletter (if you have signed up for it)
  • ensure our website is working correctly, is fit for purpose and is being seen by the outside world
  • if you get in touch with us with a question, event you might want listing etc. then we need to save details such as name and email address to enable us to get back in touch with you.

Our monthly newsletter is sent only to those people who have specifically signed up to receive it and each newsletter gives the reader the option to easily unsubscribe from receiving anymore newsletters. To ensure that the newsletter is of high quality, topical and functional we are able to see which articles are most popular and have been clicked on the most. For this we need to take note of your IP address. When a newsletter recipient unsubscribes from a newsletter we (as a matter of course) will delete their information from our newsletter system. This also deletes all other information about their interactions and the newsletters including IP address.

We use the analytics provided by our GDPR-compliant hosting company, IONOS that allows us to better understand the numbers and location of people visiting our site and what content they’re reading. This allows us to make better decisions about design and writing. Occasionally, we need to compile aggregate statistics about the number of visitors this site receives, pages visited and where they are from (geographically). Some basic aggregate statistical information is used to fulfill our reporting requirements to the European Commission but, no personally identifying data is ever included in this type of reporting. We also learn about the technology used to access our site, this is to ensure that the site will function correctly for our visitors.

We intend to remove each question, event requests etc from our website once it has been dealt with and this will include accompanying contact details. Our sites are backed up on a rolling basis so we would anticipate that contact details once deleted from a site would fully be removed from our systems in about a week.

Who has access to your information?

The EURO-NMD Secretariat are the only users (processors) that have access to your stored information whilst the project’s web developer oversees the protection of the information stored on the database using procedures that are described below where we cover security precautions.

We will not sell or rent your information to third parties. We will not share your information with third parties for marketing purposes.

Your choices

We really respect your choices and are happy to remove your personal information from our systems if you want us to.

If you would like us to look into this for you please contact

If you want to unsubscribe from our newsletters the please visit –

How you can access and update your information

The accuracy of your information is important to us and you can always inform us of any changes to this at so that we can update your information.

Security precautions in place to protect the loss, misuse or alteration of your information and protection of the overall website

When we receive information, we take steps to ensure that it’s treated securely. We have a SSL certificate in place for this website. You can tell this by the presence of a small green padlock before the URL in the browser bar at the top of the screen. This means all information sent between your web browser and our web server is secure.

To ensure the functionality of our website is secure along with the information we hold on the server, we have installed specific security software. This software not only provides a firewall to all administrative areas but monitors activities of less scrupulous visitors whose aim is to gain access to areas of the site where they can install malicious code. Such visitors, once identified by where they have attempted to visit and also their activity, have their IP address blocked by our systems and this is also added to a blacklist of similar IP addresses.

We routinely monitor the security of our sites’ systems such as this. When available, we update all software to maximise security. As part of our security procedures we are in touch with the wider community of web security experts who raise awareness of any potential issues and offer valuable advice.

Our server, where all information is held, is located in France meaning all the data and information we store is held within the EU and therefore compliant with the GDPR.

Use of ‘cookies’

Like many other websites, this website uses cookies. ‘Cookies’ are small pieces of information sent to your computer and stored on your hard drive to allow that website to recognise you when you next visit. They collect statistical data about your browsing actions and patterns and do not identify you as an individual. For example, we use cookies to store your country preference. This helps us to improve our website and make sure it works for you as you would expect it should.

It is possible to switch off cookies by setting your browser preferences. For more information on how to switch off cookies on your computer, visit our full cookies policy. Turning cookies of may result in a loss of functionality when using our website.

Links to other websites

Our website may contain links to other websites run by other organisations. This privacy policy applies only to our website‚ so we encourage you to read the privacy statements on the other websites you visit. We cannot be responsible for the privacy policies and practices of other sites even if you access them using links from our website.

In addition, if you linked to our website from a third-party site, we cannot be responsible for the privacy policies and practices of the owners and operators of that third-party site and recommend that you check the policy of that third-party site.

Review of this Policy

We keep this Policy under regular review. This Policy was last updated – 21st February 2022.


The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit