Screen 4 Rare (hereinafter “we” or “S4R”) is a multi-stakeholder initiative launched by the International Patient Organisation for Primary Immunodeficiencies (IPOPI), the International Society for Neonatal Screening (ISNS) and the European Society for Immunodeficiencies (ESID).

S4R cares about your privacy and treats personal data with the strictest confidentiality and always in accordance with the applicable legislation.

The purpose of this privacy policy is to provide you with transparent information about the data we collect, the purpose, the way we use it, with whom we share it and the rights you have regarding the processing of such data.

This privacy policy is applicable, inter alia, to the processing of your personal data when you use our website www.screen4rare.org (hereinafter “Website”).

Please note that this Website will sometimes link to webpages of third parties. S4R is not responsible for the processing of personal information by those third parties and you are advised to consult the privacy policy of such third parties prior to visiting such webpage.

It is important to read this privacy policy carefully. If you have any further questions, please do not hesitate to contact us by letter at Avenue Louise/Louizalaan 367
BE-1050 Brussels, Belgium by e-mail to info@ipopi.org 


1. Who is responsible for the processing of your personal data? 

S4R as a multi-stakeholder initiative composed by IPOPI, ISNS and ESID is responsible for the processing of your personal data as described in this privacy policy. IPOPI, ISNS and ESID will each act as a controller for the processing of your personal data in relation to the Website.

IPOPI that has its registered office at Avenue Louise/Louizalaan 367, BE-1050 Brussels, Belgium, is registered in the Crossroads Bank of Enterprises (Kruispuntbank voor Ondernemingen/Banque-Carrefour des Entreprises) under company number BE0761784055 as one of the stakeholders, is your contact point. If you have any questions, please do not hesitate to contact us at info@ipopi.org.


2. How do we collect your personal data?

S4R is a multi-stakeholder initiative launched by IPOPI, ISNS and ESID aimed at exchanging knowledge and best practices on NBS for rare diseases. Its ultimate objective is to ensure all babies born in the EU can have equal access to NBS which can be a life-saving tool for conditions such as SCID.

To achieve these objectives, we combine a wide range of activities, including the collection and dissemination of scientific information, the organisation of congresses and other events and awareness and policy actions. This may require the handling of personal data of individuals involved in these activities and hence S4R collects personal data in numerous ways from several sources.

S4R will collect your personal data in the following ways:

  • directly from your verbal or written input, for example when you submit the contact form on the Website or when you contact us by email;
  • indirectly through third parties, for example when we receive your personal data from partners or service providers;
  • through the collection of generally available data; and
  • automatically when you visit our Website, for example through the use of cookies. 

Your personal data are for instance collected:

  • when you make a donation to us;
  • when you are working with us in an expert group;
  • when you or a third party acting on your behalf, enter personal data on a form requesting an S4R product or service (e.g. when registering for an S4R organised congress or event);
  • when you enter personal data on an S4R congress (or other event) evaluation form; 
  • when you exchange business cards (e.g. at an S4R organised congress);
  • when you engage with us on social media;
  • when you collaborate with us as a speaker for congresses, seminars or other events organised by S4R; and
  • when you collaborate with us as a corporate partner of congresses, seminars or other events organised by S4R.  




3. What personal data do we process about you, on what legal ground and what do we use it for?

3.1 Congresses and events

 

3.1.1 Registrations for congresses and events

You can register for congresses and other events that we organise by completing the event registration form. For the purpose of your registration for a specific congress/event, the personal data that we collect about your will include your identification and contact details such as your name, your email address and your phone number, information about your professional life such as the organisation or company you work for and the position you hold, information about your preferences regarding food and accommodation for when you attend the event and travel information.

S4R processes the abovementioned personal data on the legal ground of performing the agreement with your regarding your attendance of the event or congress in question or in order to take steps at your request prior to entering into an agreement, to comply with our legal obligations or for the protection of your vital interests if something happens to you when you attend the event or congress. 

Your personal data will be shared with regulatory authorities, affiliates and subsidiaries of IPOPI, ISNS or ESID and S4R’s service providers or other partners, such as transport companies, hotels and other organisations cooperating with us to organise the congress or event in question. 

 

3.1.2 Speakers at congresses and events

If you partner with S4R as a speaker for an S4R congress or other event, we need certain personal data from you such as your name, your contact information, information about your professional life and academic background, your financial information, information about your preferences regarding food and accommodation and your travel information for the purpose of the organisation and publicity of the event as well as to manage travel and hotel accommodations. 

S4R processes the abovementioned personal data on the legal ground of performing the speaker agreement we have with you or to take steps at your request prior to entering into a speaker agreement, to comply with our legal obligations or for the protection of your vital interests if something happens to you when you attend the event or congress.  

Your personal data will be shared with regulatory authorities, affiliates and subsidiaries of IPOPI, ISNS or ESID and S4R’s service providers or other partners, such as transport companies, hotels and other organisations cooperating with us to organise the congress or event in question.

 

3.1.3 Corporate partners of congresses and other events

If you partner with S4R as a corporate partner of a congress or other event, we require certain personal data from you such as your name, your contact information, information about your professional life and academic background, your financial information in order to ensure that the financing of congresses and other events is handled properly.

S4R processes the abovementioned personal data on the legal ground of performing the corporate partner agreement we have with you or to take steps at your request prior to entering a corporate partner agreement, to comply with our legal obligations or for the protection of your vital interests if something happens to you when you attend the event or congress. 

Your personal data will be shared with regulatory authorities, affiliates and subsidiaries of IPOPI, ISNS or ESID and S4R’s service providers or other partners. We may also have to make some of the personal data in relation to your partnership public in accordance with applicable laws and regulations or industry guidelines.

 

3.1.4 Evaluations of congresses and events

As a visitor of a congress or event organised by S4R, you can evaluate it by completing the feedback form provided in paper or virtual formats. S4R will use your personal data for the purposes of feedback compilation and assessment and to ensure continuous medical accreditation attribution. 

S4R processes the abovementioned personal data based on the legal ground of our legitimate interest in improving our services, congresses and events.

Your personal data will be shared with regulatory authorities, affiliates and subsidiaries of IPOPI, ISNS or ESID and S4R’s service providers or other partners, such as speakers at and corporate partners of our events.

 

3.2 Information we collect automatically via our Website

When you visit our Website, information is collected in an automated manner about your computer or device, your IP address, the referring website, what pages you visit and the general use you make of the website. This information is collected using various technologies which includes saving cookies to your computer or device. 

For more information on our use of cookies and the information we collect with them, please refer to our cookie policy. 

S4R processes the abovementioned personal data on the legal ground of your consent or the legitimate interest we have in providing you with a fully functional and optimized Website. 

Your personal data will be shared with affiliates and subsidiaries of IPOPI, ISNS or ESID and S4R’s service providers or other partners, such as or website hosting service provider and analytics service providers.

 

3.3  Other information that we collect  

We also collect personal information about you if you engage with us in any other way, for example:

  • When you fill in the contact form or contact us by email, we collect personal information about you such as your name, your email address and any other information you provide us with to answer your query. 
  • When you make a donation, we process personal information such as your name and your financial information to process such payment.
  • If we believe a partnership or collaboration with you would be opportune or in order to carry out business development activities, we make use of publicly available information, information you provide us with or that we receive from a third party such as your identification and contact information and any information about your professional life in order to establish, manage or maintain the relationship with you.
  • Incidentally, we also collect personal information about you in order to comply with our legal obligations, court orders or the request of an authority, to establish, exercise or defend legal rights, to protect the rights of third parties or to prevent or investigate fraudulent or criminal activities.

S4R processes the abovementioned personal data on the legal ground of your consent, to comply with our legal obligations (e.g. tax law), to further our legitimate business purposes of those of a third party (e.g. optimizing the relationship with you), to perform the agreement we have with you or to take steps at your request prior to entering into an agreement. 

Your personal data will be shared with regulatory authorities, affiliates and subsidiaries of IPOPI, ISNS or ESID and S4R’s service providers or other partners.

 

 

4. How long do we keep your personal data?

 

We will retain your personal data for as long as this is necessary to achieve the purposes set out in Section 3. We will remove your personal data from our database as soon as we no longer need them to achieve these purposes or when you validly exercise the right to erase your personal data.

Should you wish to know how long your personal data will be kept for specific processes, please contact us at info@ipopi.org.


5. Whom do we share personal data with and how do we protect your personal data?

 

We do not sell, trade, or rent your personal data to others. 

We shall not disclose your personal data to third parties, unless it is necessary in the context of providing S4R services or for the purposes as set out above in Section 3. In this respect, your personal data may be disclosed to software providers, cloud partners, payment partners and business partners such as congress organisers, accommodation and travel partners and publishers. 

If it is necessary that S4R discloses your personal data to third parties in this context, the third party in question is required to use your personal data in accordance with the provisions of this privacy policy. We have concluded data processing agreements with the third parties concerned, which contain the necessary guarantees regarding confidentiality and privacy compliance of your personal data.

Notwithstanding the foregoing, it is however possible that S4R discloses your personal data to the competent authorities (i) if S4R is obliged to do so under law or under legal proceedings and (ii) to safeguard and defend our rights of those of third parties.

In certain limited cases, the third parties contemplated in this Section 5 whom we share your personal information with could be located in a country or territory not offering the same personal data protection as your own country or territory. If we make such transfer, we will ensure that we have implemented appropriate organisational, contractual or technical measures to ensure your personal information is adequately protected, for example by concluding the standard contractual clauses of the European Commission with such third party. If you would like to receive more information about how we protect your personal information in the event of transfers to another country or territory, please contact us at info@ipopi.org.


6. What are your rights?


6.1. Right of access

You have the right to request information on the data we hold about you from us at any time. This information includes, but is not limited to, the categories of data we process, the purposes for which it is processed, the source of the data if not collected directly from you, and, if applicable, the recipients with whom we have shared your data. You can obtain a copy of your data from us free of charge. If you require additional copies, we reserve the right to charge you for these copies.


6.2. Right to rectification

You have the right to request that we rectify inaccurate data relating to you. We will take appropriate steps to keep the data we store and process on an ongoing basis accurate, complete and current, based on the most up-to-date information available.

 

 6.3. Right to erasure

You have the right to request that we erase your data, as long as the legal requirements for this are satisfied. This may be the case if: 

  • the data is no longer required for the purposes for which it was collected or otherwise processed; 
  • you withdraw the consent on which data processing is based, and there is no other legal basis for processing; 
  • you lodge an objection to the processing of your data and there are no legitimate reasons for processing, or you object to data processing for direct marketing purposes; 
  • the data was processed unlawfully;

and provided that processing is not required:

  • to ensure compliance with a legal obligation that requires us to process your data, especially with regard to statutory retention periods;
  • to establish, exercise or defend legal claims.


6.4. Right to restriction of processing

You have the right to request that we restrict processing of your data if:

  • you dispute the accuracy of the data – in which case processing may be restricted during the time it takes to verify the accuracy of the data;
  • processing is unlawful, and you reject erasure of your data, requesting that its usage be restricted instead;
  • we no longer need your data, but you need it to establish, exercise or defend your rights;
  • you have lodged an objection to its processing, as long as it is not certain that our legitimate reasons outweigh yours.


6.5. Right to object

You have the right to object to the processing of your data at any time for reasons that arise from your particular situation, as long as data processing is based on your consent, on our legitimate interests or those of a third party. In this case, we will cease to process your data. This does not apply if we can show that there are compelling legitimate grounds for processing that outweigh your interests, or if we need your data for the establishment, exercise or defense of legal claims.


6.6. Right to data portability

You have the right to request that we transfer your data – if technically possible – to another responsible party. However, you may only enforce this right if data processing is based on your consent or is necessary for the performance of a contract. Rather than receiving a copy of your data, you may also ask us to submit the data directly to another responsible party specified by you.


6.7. Right to withdraw your consent

If the processing of your personal information is based on the legal ground of your consent, you have the right to withdraw your consent at any time.


7. How can you exercise your rights?

If you wish to exercise one of the above rights, you can send a written request by letter (to Avenue Louise/Louizalaan 367, BE-1050 Brussels, Belgium) or by email to info@ipopi.org. We promise you an answer as soon as possible, at the latest one month after we have received your request. 

We make every effort to comply with all requests within one month. However, this period may be extended for reasons relating to the specific right or complexity of your request.


8. Right to file a complaint

Please note that you always have the right to lodge a complaint with the competent supervisory authority and to seek judicial remedy in relation with the processing of your personal data.

For Belgium, this is the Data Protection Authority, which can be reached by mail at Rue de la Presse 35, 1000 Brussels, and by email at the following address: contact@apd-gba.be.  

For other countries of the EU, you can find the list of data protection supervisory authorities here: http://ec.europa.eu/justice/data-protection/article-29/structure/data-protection-authorities/index_en.htm.   


9. Revisions to our Privacy Policy 

We reserve the right to revise this privacy policy or any part of it from time to time, particularly to comply with all new applicable laws and/or regulations, the recommendations of the authorities and the decisions of the courts in this area.

 

Please review the policy periodically for changes.

 

Last updated [25 02 2022].