This website is hosted, maintained and developed by staff who are part of UILDM – Direzione Nazionale.

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.

UILDM Direzione Nazionale is an association, based in Italy, members of the project EPIThe4FSHD, looks after the EPIThe4FSHD website, its content and newsletter.

We obtain information about you, for example, when you contact us to tell us about an event or support request by you or if you sign up to receive our newsletters, we need this information to be able to interact with you.

We use Google Analytics to find out about where visitors to our website go to and where isn’t being visited so much.

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

If you sign up to our newsletter, we collect personal information including your name and email address.

We use (process) your information to:

  • to send you our newsletter (if you have signed up for it);
  • to answer you if you contact us for a request;
  • to send you survey about our project.


Our 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 any more 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 are happy to remove any member from our mailing lists who does not want to be contacted in this way please email: This email address is being protected from spambots. You need JavaScript enabled to view it.

The Google Analytics tracking information 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).

All of our activity falls within the bounds of the Google Analytics Terms of Service.

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 site 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.

The UILDM Direzione Nazionale’s staff is the only users (processors) that have access to your stored information whilst the UILDM Direzione Nazionale’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.

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 This email address is being protected from spambots. You need JavaScript enabled to view it.

If you want to unsubscribe from our newsletters the please contact This email address is being protected from spambots. You need JavaScript enabled to view it.

The accuracy of your information is important to us and you can always inform us of any changes to this at This email address is being protected from spambots. You need JavaScript enabled to view it. so that we can update your information.

When we receive information, we take steps to ensure that it is 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 Italy meaning all the data and information we store is held within the EU.

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.

We keep this Policy under regular review. This Policy was last updated – 30/03/2022.