Last updated:
September 2025
Version: 3.0

The European Haemophilia Consortium (EHC) is committed to protecting and safeguarding your personal data. As part of this commitment, we have updated our privacy policy to meet the high standards of the new European General Data Protection Regulation. We respect your privacy and treat your personal data with the strictest confidentiality.

This privacy policy is intended to inform you, in a transparent manner, about the data we collect, the purpose for collecting it, the way we use it and the rights you have regarding the processing of such data.

We provide you the opportunity to unsubscribe from our mailing lists by emailing us at [email protected] and stating you would like to be removed from any future communication. The EHC will use your personal data only for the purpose for which you’ve given permission. All information shall be kept absolutely confidential unless given consent to use it otherwise. The EHC will not share your personal information with others, unless specifically stated and with your permission.

We use secure data networks that are protected by firewall and password protection systems that are consistent with industry standards. Only authorised individuals have access to the information provided by our contacts. Our database is located in Belgium.

You have the right to ask for a copy of the information the EHC has about you. You have the right to access, modify, correct and remove your data from our database at any time. You can request this by emailing us at [email protected]. If you have questions about our privacy practices, you may contact us at the above email address.

WHO IS RESPONSIBLE FOR PROCESSING YOUR DATA?

The controller of your personal data, under applicable data privacy legislation and in regard to the processing of personal information, is the EHC.

Here is our complete contact information:

The European Haemophilia Consortium (EHC)
Rue de la LoiI 28, 1040 Brussels, Belgium
Belgian business registry (BCE) number: BE 887.106.966
[email protected]

WHAT DATA DO WE COLLECT?

We collect your data – personal or otherwise – for various reasons, which are defined in the following points. This includes the following data:

• your identifying information (surname, first name, e-mail address, country of residency, name of work company or patient organisation) for General Assembly registration purposes, usually collected through Google forms;
• your identifying information (surname, first name, e-mail address, country of residency, name of work company or patient organisation, including passport details for events taking place in the European Parliament) for other events registration purposes, usually collected through Drag’nSurvey. View Drag’nSurvey Privacy Policy;
• your food allergies for events with meals provided;
• your treatment needs for events with a treatment room;
• photos for the development of our communication materials;
• when registering for EHC WhatsApp groups, we ask you to identify if you are a person with VWD, a parent of a person with VWD, a person with inhibitors or with a factor deficiency, a parent of a person with inhibitors or with a factor deficiency, a healthcare professional or a representative of a patient organisation. View Meta WhatsApp Privacy Policy;
• when we send out emails through MailChimp (newsletter compilation, quarterly report, event report, event invitations), this email service tracks the performance of the email – who has opened it and who has clicked on any inserted links within the email. View MailChimps’ Privacy Policy.
• the type of domain with which you connect to the Internet;
• the IP address assigned to you;
• the date and time of your access to our website;
• the pages you viewed on our website;
• the type of browser, platform and/or operating system you are using;
• the search engine and the keywords used to find the website;
• your browsing preferences;
• when sending out our EHC surveys, we do so through Drag’nSurvey. View Drag’nSurvey Privacy Policy.

WHY DO WE COLLECT YOUR DATA?

We collect your data mainly to send you information and to communicate with each other. For events, we need your data for registration purposes, including passport details for events taking place in the European Parliament, and any allergies to meal options. Though rarely, we use information such as your IP address (when visiting our websites), the pages viewed and browsing preferences for statistical purposes, such as how many visitors do we have on our websites and what content is of interest.

HOW DO WE COLLECT YOUR DATA?

Most of your data is communicated to us by your active intervention. Other data, such as the date and time of your access to our website, the pages you have viewed, or your location data, are collected automatically through servers consulted and cookies placed on our website. For more information on what a cookie is, how it is used and the exact data it collects, see below. 

ARE YOUR DATA PROTECTED?

We take pride in respecting your privacy. We maintain a strict Privacy Policy and take all appropriate measures to ensure that our servers prevent, to the extent possible, any unauthorised leak, destruction, loss, disclosure, use, access or modification of your data.

HOW LONG DO WE STORE YOUR DATA?

We keep your data for the time necessary to accomplish the objectives pursued and outlined in this Policy. Once this goal is achieved, we either delete or anonymise them.

WHAT ARE YOUR RIGHTS AND HOW CAN THEY BE EXERCISED?

You may, at any time, request to verify, access, rectify, delete, transfer and object to the use of your data, as well as request the limitation of such use of your data. To do so, simply send us an email at the following address: [email protected]. We will then make every effort to take the necessary action as soon as possible.

WHO HAS ACCESS TO YOUR DATA AND TO WHOM ARE THEY COMMUNICATED?

Our employees have access to your data only to the extent necessary for processing your request and/or for fulfilling the objectives pursued (see “WHY DO WE COLLECT DATA?”). Each of them is subject to a strict obligation of confidentiality.

DO WE TRANSFER YOUR DATA ABROAD?

We do not transfer any of your personal data unless it has been specifically requested and we have received your permission ahead of time to do so.

HOW TO HEAR FROM US?

We only use your email address for communication purposes, such as sending out our newsletters, event invitations and important EHC-related news (for example, in regards to treatment).

With your consent, we will subscribe you to our newsletter. You can unsubscribe and withdraw your consent to these communications at any time by sending an email to the following address: [email protected]

WHAT HAPPENS IN THE EVENT OF A CHANGE TO THE PRIVACY POLICY?

If we had to make any changes to this Privacy Policy, you would be notified through our website or email.

GENERAL WARNING

The EHC processes the personal data transmitted to it in accordance with the legislation in force, and, in particular, Regulation 2016/679 of 27 April 2016 on the protection of individuals with regard to the processing of personal data and the free movement of such data, applicable from 25 May 2018 (hereinafter the “General Data Protection Regulation”).

Access to EHC’s WhatsApp groups implies the User’s full and unreserved acceptance of this Privacy Policy, as well as its general terms of service and the cookie policy.

The User acknowledges having read the information below and authorises the EHC to process, in accordance with the provisions of the Policy, the personal data that they communicates on our websites.

The Policy is valid for all pages hosted on the EHC Websites.  

DATA CONTROLLER

Simply visiting the EHC Websites shall take place without having to provide any personal data, such as first name, surname, postal address, e-mail address, etc.

Any questions regarding the processing of this data may be sent to the following address: [email protected]

DATA COLLECTED

By completing event registration forms, you allow, in particular, the EHC and its provider, Conference Organisers, to record and store, for the purposes mentioned in “WHAT DATA DO WE COLLECT?” and “WHY DO WE COLLECT YOUR DATA”, the following information:

• identifying data, such as the first name and surname, e-mail address and company or patient organisation name, country;
• invoicing information;
• communications between you and the EHC;
• information voluntarily provided by you for a purpose specified in this Policy, the Cookie Policy, or on any other medium of communication used by the EHC;

The information collected by Conference Organisers, through their registration support portal, Eventsair, is stored for one year, and then erased. See Eventsair’s Privacy Policy here. 

In order to facilitate browsing the Website as well as to optimise technical management, the Website may use Cookies. These Cookies record, in particular:

• your browsing preferences;
• the date and time of access to the Website and other data related to traffic;
• the pages visited.

When you access the Website, the servers consulted automatically record certain data, such as:

• the type of domain with which you connect to the Internet;
• the IP address assigned to you (when connected);
• the date and time of access to the Website and other data related to traffic;
• the pages visited;
• the type of browser used;
• the platform and/or operating system used;
• the search engine as well as the keywords used to find the Website.

No nominative data identifying you is collected through the cookies and servers consulted. This information is kept for statistical purposes only and to improve the Websites.

PURPOSES OF PROCESSING THE DATA

The Website collects, stores and uses its Users’ data for the following purposes, in particular:

• to analyse, adapt, and improve the content of the Website;
• to provide service;
• to facilitate the availability and use of the Website;
• for any other purpose to which you have expressly consented.

RIGHTS OF THE PERSON CONCERNED

According to the regulations on the processing of personal data, you have the following rights:

• Right to be informed about the purposes of the processing (see above) and the identity of the data controller.
• Right of access and verification of data: you may, at any time, have access to the data that the EHC has on you or check if you are included in the database of the EHC. We ask you to make this request by email in order to be able to identify you with certainty (Please provide the EHC with your first name, surname, complete address and a copy of your identity card). The EHC will thus ensure that only you can access your data.
• Right of objection: you may, at any time, object to the use of your data by the EHC and by our partners by sending your request to the EHC by email.
• Right of cancellation and/or modification: you may, at any time, notify the EHC of corrections to the data concerning you and, where appropriate, request the deletion of your personal data.
• Right of limitation of processing: you may, in particular, obtain a limitation of processing when you have objected to the processing, when you dispute the accuracy of the data, or when you consider that the processing is illegal.
• Right of transferability:You have the right to receive the personal data that you have communicated to the EHC.
• You may also request rectification free of charge, and, where applicable, request the deletion of all your personal data from EHC’s database and object to the use, and, where appropriate, request the limitation thereof by sending a written request, accompanied by a copy of your identity card or passport, to the EHC by e-mail to [email protected], or by mail to RUE DE LA LOI 28, 1040 BRUSSELS, BELGIUM. The EHC will then take the necessary steps to carry out this request as soon as possible.

DURATION OF STORING THE DATA

The EHC will keep your personal data for the duration necessary to achieve the objectives pursued and outlined in this Policy.

COMPLAINT WITH THE SUPERVISORY AUTHORITY

You have the right to lodge a complaint with the Data Protection Authority:

Rue de Louvain 1
1000 Bruxelles
[email protected]

SECURITY

In order to guarantee optimal payment security, the EHC, through its provider, Conference Organisers, uses the Global Payments – Realex Payments Holding Ltd online payment service to register for the Annual Conference, which meets high-security standards.

In addition, the EHC has taken the appropriate organisational and technical measures to ensure a level of security adapted to the risk and that, to the extent possible, the servers hosting the personal data processed prevent:

• unauthorised access to or modification of this data;
• improper use or disclosure of such data;
• unlawful destruction or accidental loss of such data.

In this respect, employees of the EHC who have access to this data are subject to a strict confidentiality obligation. Nevertheless, the EHC may in no way be held liable in the event that this data is stolen or hijacked by a third party despite the security measures adopted.

You yourself undertake not to commit acts that may be contrary to this Policy, the Terms of Service, the Cookie Policy or, in general, the law. Violations of confidentiality, integrity and availability of information systems and data which are stored, processed or transmitted by these systems, or the attempt to commit one of these violations, shall be punishable by imprisonment of between three months and five years and a fine of between €26 and €200,000, or one of these penalties only.

WHAT ARE COOKIES?

Cookies are small pieces of data or text files placed on your local computer by websites. Such Cookies can have different purposes: for instance, there are Technical Cookies (language settings, for example), Session Cookies (temporary cookies) and Tracking Cookies (cookies following and recording your behaviour on the website in order to be able to offer a better user experience).

A Cookie contains a unique code which allows the recognition of your browser during a visit to the Website or to improve your user experience during repeated visits to the platform.

Cookies can be placed by the server of the Website you are visiting or by a partner with whom this website collaborates. The server of the Website can only read the Cookies it has placed itself. It does not have access to other information contained on your computer or mobile device.

The content of a Cookie usually consists of the name of the service that placed the Cookie, an expiry date and a unique numerical code.

Cookies generally ease and speed up the interaction between users and the website and help users navigate between the different parts of the Website. Cookies can also be used to personalise the content of the Website to the user.

More information on the types of Cookies can be found on www.allaboutcookies.org.

EHC USES THE FOLLOWING COOKIES:

1. Necessary Cookies

These Cookies are essential to be able to visit our Websites and to use particular parts of it.  These Cookies allow you to navigate between the different parts of the website or to complete forms and take part in discussions on our platform for example. Also, if you want to log in to the personal platform of EHC with your personal account, these Cookies are needed to check your identity in a safe manner before we allow access to your personal information.  If you refuse these Cookies, certain parts of the Website may not work, or may not work optimally.

2. Functional cookies

Functional Cookies are cookies which ease and facilitate the functioning of our Website for our users and ensure that you will have a more personalised browsing experience.  The Website uses a registration or a newsletter for instance. These Cookies can also be used to recognise you if you revisit the Website and to store your registration details or to remember the preferences you have indicated on the Website.

3.  Advertisement cookies

In specific cases, we use cookies from reliable third parties. This Website uses Jetpack, a WordPress plugin, which collects data to enhance website functionality and user experience. Jetpack’s Privacy Policy outlines how it handles user information, including data collection, storage, and usage practices. 

Jetpack also provides tools to help website owners create customised privacy policies, explaining their specific data handling practices.

COOKIE MANAGEMENT

During your first visit to our Website, you are asked to accept our different types of Cookies. You can permit or refuse Cookies by each category. You can, at all times, change the Cookie Settings for our Website via the hyperlink at the bottom of our Website and withdraw your permission.

You can refuse the installation of these Cookies during the first visit to the website by ticking ‘Reject All’ in the offered pop-up screen. 

You can refuse the installation of Cookies via your Browser Settings. Switching off Cookies may mean that you can no longer use certain functionalities of the Website. You can find information on how to refuse cookies for most used browsers here: http://www.aboutcookies.org/

You can also, at any time, remove already installed Cookies from your computer or mobile device.

If you wish to use the Website without any restrictions, please make sure that Cookies are switched on in your browser. To switch on Cookies, do the following:

Browser – Microsoft Internet Explorer 

• In Internet Explorer, click on ‘Internet options’ in the ‘Extra’ menu.
• Under the ‘Privacy’ tab, move the settings bar to ‘Low’ or ‘Accept all Cookies’ (setting above ‘medium’ switches off cookies).
• Click on ‘OK’.

Browser – Mozilla Firefox

• Click on ‘Firefox’ in the top left corner of your browser and then click on ‘Options’.
• Under the ‘Privacy’ tab, ensure that the ‘Let websites know that I do not wish to be followed’ is not ticked.
• Click on ‘OK’.

Browser – Google Chrome

• Click on ‘Extra’ at the top of your browser screen and select ‘Options’.
• Click on ‘Under the Hood’ tab, find the ‘Privacy’ part and select ‘Content settings’ button.
• Select ‘Allow local data to be set’.

Browser – Safari

• Click on the ‘Cog’ pictogram at the top of your browser screen and select the ‘Preference’ option.
• Click on ‘Security’, tick the option stating: ‘Block Cookies from third parties and advertisement cookies’.
• Click ‘Save’.

You can find more details on the EHC Cookie Policy here.

COMMUNICATION TO THIRD PARTIES

The EHC treats personal data as confidential information. It will not communicate them to third parties under any condition other than those specified in the Policy, such as to achieve the objectives set out and defined in this Policy, or under the conditions in which the law requires it to do so.

The EHC may communicate your personal information to third parties to the extent that such information is necessary for the performance of a contract. In such cases, these third parties will not communicate this information to other third parties.

The communication of this information to the aforementioned persons shall, in all circumstances, be limited to what is strictly necessary or required by the applicable regulations.

TRANSFER TO A NON-EU COUNTRY OR COMPANY

The EHC transfers data to a non-EU country only when that country provides an adequate level of protection within the meaning of the legislation in force, and, in particular, the Law of 8 December 1992 on protection of privacy and its executive orders, and Regulation 2016/679 of 27 April 2016 on the protection of individuals with regard to the processing of personal data and the free movement of such data, applicable from 25 May 2018 (General Data Protection Regulation), or within the limits permitted by the legislation in force, for example by ensuring the protection of data by appropriate contractual provisions.

PAYMENT SERVICE

The payment service integrated used by Conference Organisers on behalf of the EHC is provided by Global Payments – Realex Payments Holding Ltd.

When making a payment through the EHC Annual Conference registration link, you declare that you have read, understood and accepted Global Payments – Realex Payments Holding Ltd’s Privacy Policy. 

NOTE CONCERNING MINORS

Persons under the age of 13 and persons who do not have full legal capacity are not permitted to use the Website without parental consent.

UPDATES AND CHANGES TO THE POLICY

By informing Users through the Website, the EHC may modify and adapt the Policy, in particular, to comply with any new legislation and/or regulations applicable (such as the General Data Protection Regulation applicable from 25 May 2018), the recommendations of the Belgian Privacy Commission, the guidelines, recommendations and best practices of the European Data Protection Board and the decisions of the courts and tribunals on this issue.

APPLICABLE LAW AND COMPETENT COURT

The validity, interpretation and/or implementation of the Policy are subject to Belgian law.

In the event of a dispute relating to the validity, interpretation or implementation of the Policy, the courts and tribunals of Brussels have exclusive jurisdiction, to the extent permitted by the provisions of applicable private international law.