Privacy Policy

This policy (the “Privacy Policy”) describes how we collect, use, transfer and disclose information relating to you (“Personal Information”) that we may obtain through this website and by other means.  We process your Personal Information in compliance with the privacy and data protection laws in force in Belgium.

Information collected from you

This website collects your information in the following contexts, with your consent or to meet its legitimate interests:

  • Event Registration. The Rare Disease Moonshot coalition organises public events to support public discussion of issues relevant to health policy in the EU. When registering for an event, you will be asked for your name, email address and professional affiliation. On occasion, when an event is being organised with a partner, additional information may be requested, for example for security purposes. This additional information will be deleted after the event.
  • Our website provides contact information for the Rare Disease Moonshot coalition. Personal information we receive through this channel is used to respond to your request. We may ask if you want to be added to our contact database.
  • The coalition will retain your contact information over the lifetime of the Coalition. You may withdraw your consent to remaining on our database at any time by contacting the coalition is
  • The Rare Disease Moonshot processes the personal details of its partner organisations, in line with its legitimate interest, in order to manage the coalition.

Information retained on our database will be used for the purposes specified above and will not be sold or shared with third parties other than in relation to these purposes. We will not use your Personal Information for purposes unrelated to those described in this Privacy Policy without first notifying you and, where required, offering you a choice as to whether or not we may use your Personal Information in this different manner.

Information collected when you visit our website

To make this site work properly, we sometimes place small data files called cookies on your device. A cookie is a small text file that a website saves on your computer or mobile device when you visit the site. It enables the website to remember your actions and preferences (such as login, language, font size and other display preferences) over a period of time, so you do not have to keep re-entering them whenever you come back to the site or browse from one page to another.

You will be invited to enable the use of cookies when you enter the site. Enabling these cookies is not strictly necessary for the website to work but it will provide you with a better browsing experience. You can delete or block these cookies, but if you do that some features of this site may not work as intended.

How do we use cookies?

This website uses cookies for the following purposes:

  • to remember users’ actions, to identify the user over the course of their visit
  • to remember if you have agreed (or not) to our use of cookies on this site
  • for measurement of visitor’s use of the site, for example which pages are most visited and how well the site functions. The information gathered for this purpose includes IP address, operating system, web browser, pages visited, demographics of the users, the device used, and where the visit originated. Google provides certain privacy options and choices in this regard, which are described here
  • to meet our legal obligations and in relation to legal claims, and to prevent, investigate and remediate possible breaches of our terms and conditions and threats to the integrity of our website.

Some pages and videos embedded in our pages use a cookie to anonymously gather statistics on how you got there and what videos you visited. Our website also contains links to Twitter, LinkedIn and a number of similar social networks. When you use these share buttons, a third-party cookie is installed. Please note that we do not have any control over how the information in these cookies is used nor do we have access to it. Please refer to the cookie policies of the relevant provider for more information.

While the information gathered by the cookies relates to you, it is not used to identify you personally and the data remains fully under our control. These cookies are not used for any purpose other than those described here.

How to control cookies

You can control and/or delete cookies as you wish – for details, see You can delete all cookies that are already on your computer and you can set most browsers to prevent them from being placed. If you do this, however, you may have to manually adjust some preferences.

Sharing information
The personal data that the website collects is only accessible to employees of the partners of the Rare Disease Moonshot initiative. In addition, we may share your Personal Information for the purposes mentioned above with:

  • service providers in connection with the organisation of the events and the operation of this website, including website hosting, the provision of technology related services and promotional material distribution; or
  • public authorities, government regulators or other law enforcement officials and the courts, as required or permitted by law or when compelled by a binding order.

When sharing your Personal Information with entities located in countries outside the EEA that do not provide for an equivalent level of data protection, we will put in place contractual guarantees in accordance with applicable data protection law.  You can use the contact information below to request more information.

Data Security

We maintain appropriate technical, physical and organisational measures to protect Personal Information against accidental or unlawful destruction or accidental loss, alteration, unauthorised disclosure or access. Unfortunately, no information security system can be 100% secure. As a result, although we strive to protect your Personal Information, we cannot ensure or warrant the security of the Personal Information against unpredictable loss or unauthorised access.

Your Rights

Subject to restrictions under applicable law, you have the right to request from us access, rectification, erasure, restriction and deletion, and portability of your Personal Information. Such requests can be addressed to the contact information below. We may require you provide further proof of identity.

Data Integrity

We take reasonable steps to ensure that the Personal Information we collect is relevant for the purposes for which it is to be used and that the Personal Information is reliable for its intended use and is accurate, complete and current. You are responsible for making sure that your information is up-to-date and accurate when you provide it to us and where our services offer you the tools to maintain your information.

Retention of Personal Information

We will only retain Personal Information for as long as the Moonshot initiative will exist, or for as long as necessary for the purpose(s) for which it is processed.  We will delete Personal Information when it is no longer needed and, in any case, upon expiration of the maximum storage term set forth in applicable law.

Changes to This Privacy Policy

If we make any material changes to this Privacy Policy, we will post a revised link on the home page of the website that indicates “Revised Privacy Policy” or a comparable notification about the changes. You should check this website periodically to see if any recent changes to this Privacy Policy have been made.  You can also tell if this Privacy Policy has changed recently by reviewing the Effective Date posted at the beginning of this Privacy Policy.

Links to Other Internet Websites

The privacy practices set forth in this Privacy Policy are for this website and other specified activities only. Other websites hosted by third parties may have different practices.  If you link to or otherwise visit any other websites managed by third parties, please review the privacy policies posted at those websites. We have no control over those websites and are not responsible or liable for the policies and practices followed by third parties.

Contact Us

If you have any questions about this Privacy Policy or our privacy practices, please contact us at:

If you think that your complaint has not been adequately addressed, you may have a right to lodge a complaint with the Supervisory Authority for privacy in your country.


Terms and conditions of use of the Rare Disease moonshot website. These conditions may be changed at any time. The disclaimer was last updated in November 2022.

Information included

The material contained on this website is for information only. The Rare Disease Moonshot partners endeavour to make their best effort to up-date the information on a regular basis, but it is not claimed to be exhaustive. The Rare Disease Moonshot partners have compiled the pages on this website very carefully, and the information placed on this web site is offered in good faith. This information is believed to be correct. Nevertheless, the Rare Disease Moonshot partners maks no representations or warranties as to the completeness or accuracy of any of this information. The Rare Disease Moonshot partners will in no event be responsible for damages of any nature whatsoever resulting from the use of or reliance on the information contained in this website.


This website and its content, where applicable, are subject to the copyright of the EU Health Coalition. Reproduction is authorised, except for commercial purposes, provided that the source is mentioned and acknowledged. The Rare Disease Moonshot initiative claims no copyright on any official document or document in the public domain. Copyright, if any, of third party material found in this site must also be respected.

Contact details

Contact e-mail:

For any query, you can send an email to
This site was created and is managed in accordance with Belgian law.