Privacy policy
This page was last updated on 16 February 2023
Table of contents
Article 1 – Definitions
Article 2 – Identity of the Controller and scope of the policy
Article 3 – Modifications and external links
Article 4 – Categories of personal data, purposes and legal grounds of the processings.
Article 5 – How long does the AfPH keep your personal data?
Article 6 – Does the AfPH disclose your personal data to third parties?
Article 7 – Technical and organizational security measures adopted by the AfPH
Article 8 – Your rights regarding your personal data which is processed by the AfPH
Article 9 : Contact, complaints and recourses
Article 1 – Definitions
“The AfPH”: This abbreviation refers to the Alliance for Pulmonary Hypertension, an International non-for-profit organization under Belgian law which is identified in the so-called Belgian crossroad banks for companies under the number 0757534861 and with registered headquarters located in Washingtonstraat 40, 1050 Elsene, Belgium.
“PH-KSP”: Refers to the “Pulmonary Hypertension Knowledge Sharing Platform”, a platform which is managed by the “Alliance for Pulmonary Hypertension” (AfPH) and which may be consulted via the following link: www.ph-ksp.com
“Personal data”: This term refers to any information based on which a living person may be identified directly or indirectly. Examples of personal data include: your name and surname, an e-mail address (not generic), any identification number which may lead to identification of a living person whether directly or combined with other information, one or more elements of your physical, physiological, genetic, psychic, economic, cultural or social identity.
“Processing”: This term refers to any operation or set of operations done by a controller or a processor on personal data including storage, access, alteration, dissemination, erasure, transfer. Processing can be done wholly or partly by automated means and or by non-automated means (if the processing forms part of a filing system or is intended to form part of a filing system).
“Privacy policy”: This term refers to this document whose purpose is to inform the visitors of the PH-KSP of all the relevant aspects about the processing of their personal data by the AfPH via the PH-KSP and how they may exercise their rights.
“Controller”: This term refers to the natural or legal person, public authority, agency or other body which, alone or jointly with others, determines the purposes and means of the processing of personal data. In the context of this Privacy Policy this term refers to the AfPH (unless stated otherwise).
“Data subjects/ visitors”: The term refers to any living person. In the context of this Privacy Policy, this term refers more specifically to visitors/users of the PH-KSP.
Article 2 – Identity of the Controller and scope of the policy
For the purposes and means of this Privacy Policy, the AfPH acts as “data controller” (as defined in the EU “General Data Protection Regulation” also referred to as “GDPR”) for all the processing of personal data described hereafter.
This Privacy Policy’s objective is to inform the visitors of the PH-KSP and those contacting the AfPH through the PH-KSP “Contact” or “share” forms about all the legally required information about the processing of their personal data by the AfPH and how they may exercise their rights.
Article 3 – Modifications and external links
The AfPH may update this Privacy policy at any time, the date of the last modification of this Privacy Policy is always mentioned under the title. Previous applicable versions may be consulted on demand.
The AfpH includes external links to third party websites on the webpages of the PH-KSP. These links are marked with a specific symbol indicating that the user is leaving the PH-KSP. The activation of these links is the sole responsibility of the visitors of the PH-KSP. It is advised to consult the Privacy policy as well as the Cookie policy of the websites which are concerned.
Article 4 – Categories of personal date, purposes and legal grounds of the processing
Essential cookies
Data collected::
When you visit the PH-KSP the AfPH places functional cookies on the visitor’s terminal equipment which may remember their IP address, search terms and possibly the type of errors encountered.
The full list of cookies is available in the Cookie policy located in the footer of the PH-KSP website home page
Purpose & Legal basis of the processing:
Functional cookies are activated by default the AfPH on the PH-KSP based its legitimate interests to propose a functioning Platform to its visitors, which includes having access to all of its contents and functionalities.
Non-essential cookies
Data collected:
When you visit the PH-KSP the AfPH may also (if you accept) place non-essential cookies on the visitor’s terminal equipment which may remember their IP address, domain name, browser type and operating system as well as the web site that referred them to the PH-KSP (where applicable), the files that the visitor downloads, the pages they visit, and the dates/times of those visits.
The full list of cookies is available in the Cookie policy located in the footer of the PH-KSP website home page.
Purpose & Legal basis of the processing:
The information gathered by non-essential cookies during general browsing of the PH-KSP is used by the AfPH to analyze trends and usage of the PH-KSP and to help improve the Platform and its offerings.
The AfPH always requests the prior consent from visitors of the PH-KSP via its cookie banner before placing such cookies.
Contact forms on the PH-KSP
Data collected:
Last name, first name, email address and any personal data included in the request.
Purpose & Legal basis of the processing:
Personal data included in these requests is processed by the AfPH so that it may respond to requests initiated by visitors on the basis of its legitimate interest to answer questions related to its activities and objectives.
Disclaimer: The visitors of the PH-KSP who fill in a contact request are responsible for informing (sharing this Privacy Policy- and collecting the necessary authorisation of any other individual whose personal data may be included in their request.
Testimonies provided via the «Share knowledge form” and published on the PH-KSP and other communications channels managed by the AfPH.
Data collected
PH-KSP users may submit different types of testimonies/content (e.g. articles, videos, photos, patient and caregiver stories) to be uploaded, published and shared by the AfPH on the PH-KSP platform as well as on other communications channels managed by the AfPH.
Purpose & Legal basis of the processing :
The purpose of the processing is to raise awareness about Pulmonary Hypertension.
If a visitor fills in the Share the knowledge form on the PH-KSP he/she will be asked to give their prior explicit consent to AfPH to process any personal data (including special categories of data) included in their submission. This prior explicit consent will be collected by the AfpH through an Authorization to publish form which will be (manually) filled in and attached by the author to his/her submission. The author of the submission must also include in his/her submission the (manually) filled authorisation forms of any other person which may be identifiable in the submission.
NOTE: If the authorisation form is not completed by the author of the submission and/or the AfPH has not received the valid authorisation forms of identifiable third parties, the AfPH, after having contacted the author of the submission to collect the missing authorisation forms (and waited for a reasonable amount of time for an answer), may decide to refuse to publish the submission or anonymise some of the persons which may be identified in it in compliance with its Content curation policy
Article 5 – How long does the AfPH keep your personal data?
Essential and non-essential cookies:
Please consult our Cookie policy to learn about the retention period of all types of cookies which are present on the PH-KSP.
Contact forms on the PH-KSP
The AfPH keeps communications with visitors for as long as necessary in order to be able to respond to it and then deletes them 1 year after the last communication with the visitor.
Testimonies provided via the «Share knowledge form” and published on the PH-KSP and other communications channels managed by the AfPH
Personal data present in these testimonies (text, photo, videos) are processed as long as their publication is authorized by the author of the submission and third parties which are identifiable. In case an authorisation is withdrawn, the AfpH will delete the publications or anonymise the person who withdrew their authorisation (based on an evaluation of the demand and the testimony).
Article 6 – Does the AfPH disclose your personal data to Third parties
The AfPH may call on third parties acting as processors (such as defined under the GDPR, for example it could be an external webmaster) in order to provide you with a functioning platform and answer your requests.
These processors are contractually bound to the AfPH by an obligation of confidentiality and may only process your personal data in accordance with the instructions given to them by the AfPH. Moreover, our contractors engage themselves to provide the AfPH sufficient technical and organisational security guarantees to protect your personal data from any unwanted access or alteration. A list of processors can be given on demand (provided it does not reveal any confidential information).
In exceptional cases, The AfPH may be compelled to disclose personal data by virtue of a court order or to comply with imperative regulations or legislation. In such cases, the AfPH will make reasonable efforts to inform data subjects beforehand, subject to the limits provided by law.
In the event of reorganisation of the AfPH ‘s activities, the AfPH may transfer the personal data it processes to new entities or new third parties carrying out all or part of the activities of the AfPH. The AfPH will make reasonable efforts should this situation arise to inform data subjects before transferring their data to a third party, but data subjects understand that this is not technically or commercially feasible in all situations.
The AfPH does not make available any personally identifiable information collected through PH-KSP outside of its organization except in the specific cases described below. The AfPH does not sell your personal data.
Article 7 – Technical and organisational security measures adopted by the AfPH
The AfPh has implemented adequate technical (e.g.: firewall, antivirus, multi factor authentication, secured cloud based solutions …) and organisational (e.g. internal policies, contractual obligations, confidentiality requirements) security measures to prevent the destruction, loss, falsification, modification, unauthorised access or accidental notification to third parties of your personal data.
More information about these measures may be asked to the AfPH as long as this information is not considered confidential by the AfPH (for example when disclosure could be detrimental to the security of the personal data processed by the AfPH).
Article 8 – Your rights regarding your personal data which is processed by the AfPH.
What rights can you exercise:
You have rights which are associated to the processing of your personal data which include the following rights:
- Access, rectification, and erasure of your personal data
- Limitation of the processing
- Data Portability (in specific cases)
- Right of opposition to automated decisions and profiling (currently not applicable to the AfPH)
- Right to object or withdraw your consent (the exercise of one of these rights depends on the legal ground for the processing)
Before exercising your rights, please take into consideration that:
The extent to which data subjects may exercise their rights may depend on the legal ground based on which their personal data is being processed by the controller. For example, you can only object to the processing of your personal data when it is processed based on legitimate interests or for the performance of a task in the public interest.
In some cases, the AfPH may have valid reasons to refuse some requests. For example, the AfPH may refuse your objection to the processing of your personal data if it can demonstrate compelling legitimate grounds for the processing which override the interests, rights and freedoms of the data subject or for the establishment, exercise or defense of legal claims.
You must also be aware that the exercise of some of your rights may impact the ability for us to provide some services to you. (or example if you should ask us to stop processing your personal data which is necessary for answering a question which you have asked us via the contact form.
It is therefore advised to assess the consequences of the exercise of your rights and read carefully this Privacy Policy before exercising your rights.
How can you exercise your rights and when can you expect a response:
Visitors may exercise their rights by contacting the AfPH by sending an e-mail to the following adress info@allianceforph.org or via the Contact form
If the AfPH needs to ask more details to confirm your identity or to be able to to be able understand precisely your request, you will be contacted within a reasonable delay by the AfPH.
The AfPH will give a final answer to your your request in the 30 days following the reception of your request or (if applicable) after having confirmed your identity or after having received the complementary information necessary to identify the nature of your request.
In exceptional cases, the AfPH may need more time to answer your request, for example due to the material or technical difficulties involved in answering it. In that case, you will be informed within a reasonable delay about the extension of the 30 days delay (which may not exceed two months).
Article 9 – Contact, complaints and recourses
You can ask us any privacy related questions via the following e-mail address: info@allianceforph.org
If you believe that your rights have been violated by the AfPH, you may lodge a complaint with the Belgian Data Protection Authority (GBA)
Address: Rue de la Presse 35, 1000 Brussels, Belgium; telephone number: +32 (0)2 274 48 00, email: contact@apd-gba.be
A complaint before the data protection authority does not prejudice your right to initiate a judicial proceeding before the competent courts.