European Haemophilia Consortium (EHC) Data Privacy Policy

Effective since: May 2018

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 office@ehc.eu and stating you would like to be removed from any future communication. You may choose to receive only specific communications or none at all through an online form “Update your preferences,” which is also available at the bottom of all our email communications. 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 office@ehc.eu. 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 L’INDUSTRIE 10, 1040 BRUSSELS, BELGIUM

Belgian business registry (BCE) number: BE 887.106.966

office@ehc.eu

WHAT DATA DO WE COLLECT?

We collect your data – personal or otherwise – for various reasons, which are defined in the following point. 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 event registration purposes, usually collected through Google forms;
  • passport details for events taking place in the European Parliament;
  • 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 our chatroom on ehc.eu/community, we ask you to identify if you are a person with inhibitors, parent of a person with inhibitors, care giver of a person with inhibitors, health care professional, representative of a pharmaceutical company, person with haemophilia without inhibitors, staff member or representative of a patient organisation;
  • 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 annual EHC surveys, we do so through surveymonkey.com. The collected information is the answers to the asked questions, the IP address from which the survey was completed and what links were clicked on within the survey (if any). View SurveyMonkeys’ 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 for 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, visit our page concerning our cookie policy.

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 unauthorized 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 outlines in this policy. Once this goal is achieved, we either delete or anonymize 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: office@ehc.eu. 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 point 3). 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: office@ehc.eu

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.

 

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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”).

1.3          Access to the chatroom on our website www.inhibitors/ehc.eu implies the User’s full and unreserved acceptance of this Privacy Policy, as well as its general terms of service and the cookie policy.

1.4          The User acknowledges having read the information below and authorizes the EHC to process, in accordance with the provisions of the Policy, the personal data that he/she communicates on our websites.

1.5          The Policy is valid for all pages hosted on the websites and for the registrations for the chatroom on https://inhibitor.ehc.eu/.

DATA CONTROLLER

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

Any question regarding the processing of this data may be sent to the following address: office@ehc.eu

DATA COLLECTED

By completing event registration forms and registration for the chatroom on www.ehc.eu/community  allows, in particular, the EHC 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, on the Website or on any other medium of communication used by the EHC;

In order to facilitate browsing the Website as well as to optimize 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 Website.

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 allow you to receive messages (for example for new information upload notifications)
  • to facilitate the availability and use of the Website;
  • to inform you about any changes on the Website and its features;
  • 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 informedabout 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 be ensured that only you can access your data.
  • Right of objection: you may, at any time, object to the use 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 disputes the accuracy of the data, or when you consider that the processing is illegal.
  • Right of transferability: you has 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: office@ehc.eu or by mail: RUE DE L’INDUSTRIE 10, 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 Commission for the Protection of Privacy.

Rue de la Presse, 35
1000 Bruxelles

commission@privacycommission.be

SECURITY

In order to guarantee optimal payment security, the EHC uses the Ex Ordo online payment service on its www.conference.ehc.eu website, which meets high security standards.

In addition, the EHC has taken the appropriate organizational 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:

  • unauthorized 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.

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 case, 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 into our Conference Website is provided by Ex Ordo.

When making a payment through the Conference Website, you declare that you have read, understood and accepted Ex Ordos’ privacy policy. It can be consulted at the following web address: https://www.exordo.com/legal/data-protection-and-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 parent 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.