Privacy Policy

Last updated: May 24, 2018

EFA PRIVACY POLICY

In order to achieve the best engagement with our EFA Patients community, our partners, supportive audience and people who can change the lives of people with allergy, asthma and COPD, such as yourself, EFA sometimes needs to collect personal information about you.

Transparency and democracy being in the core of our Code of Ethics and Conduct, we are committed to protecting the privacy of your data by ensuring the European General Data Protection Regulation (GDPR).

We are open and transparent about how we use your data and we enable you an easy opportunity to give us your consent on how and if you want your data to be used.

We engage ourselves to making sure your data are safe and to informing you of any personal data breaches we might encounter.

This privacy policy tells you what to expect when EFA collects personal information. If you do not want your data to be used in the ways described in this policy or if you want to consult your data, contact us to let us know, we will make sure that you receive your data in a month of time. You can write us at the address 35 Rue du Congrès, 1000 Bruxelles, Belgium, or email us on This email address is being protected from spambots. You need JavaScript enabled to view it. or call us on +32(0)2 227 27 12.

CONTENT OF THIS PRIVACY POLICY

Who we are?

Why this privacy policy?

Update of this Privacy Policy

SECTION 1: Collection of your data

For information, advocacy and representation purposes

1. People visiting our websites

2. People receiving newsletters

3. People who engage with EFA through social media channels

4. People who sign up for EFA events

5. People donating money to EFA or expressing an intent to donate in the future

For internal work purposes and to enable our core work as a federation of patients’ associations

6. People who apply to work, have worked, or who work for EFA or are members of the Board

7. People among EFA Members and other patient associations

8. People who participate in EFA surveys and studies

9. People who contact EFA

10. People who conduct activities with EFA

11. People who have a public or political mandate

SECTION 2: Use of your data

A. How long do we keep your data?

B. How do we secure your data?

SECTION 3: Your rights

Who we are?

The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) is an independent and democratic non-profit organisation with its central office located in Brussels, Belgium. EFA is a European alliance of 43 allergy, asthma and chronic obstructive pulmonary disease (COPD) patients’ associations in 25 European countries, and represents them at the European level.

We pursue the public interest objective of having all people with allergy, asthma and chronic obstructive pulmonary disease (COPD) in Europe living uncompromised lives, having the right and access to best quality care, and participating in their care and to have a safe environment. Our mission is to be the voice of allergy, asthma and COPD patients at European level and to be actively involved in the decisions impacting their health.

Our federation receives funding from the European Union, private industries and membership contributions.

Why this privacy policy?

We are open and transparent about how we use your data and we enable you an easy opportunity to give us your consent on how and if you want your data to be used.

We engage ourselves to making sure your data are safe and to informing you of any personal data breaches we might encounter.

Update of this Privacy Policy

We may update this Privacy Policy from time to time to reflect changes in the law and/or our privacy practices, without notification in case of minor changes. We will always update the date of the latest revision of our Privacy Policy on the top of this webpage. We encourage you to check whether we have recently made any changes to our Privacy Policy. Any changes to our Privacy Policy will become effective immediately, when we post the revised Privacy Policy on our website.

SECTION 1: Collection of your data

By participating in our activities and using our services, you are indicating that you consent to our use of your personal information as described in this Privacy Policy (as regularly updated). Depending on the nature of our activity/service, we may require to collect personal information about you in the ways described below.

For information, advocacy and representation purposes

1. People visiting our websites

While you are using any pages of our websites http://www.efanet.org/, http://manifesto.efanet.org/, http://flywithoxygen.efanet.org/, we use a third-party service, Google Analytics, to measure what information is of outmost interest among our audience and how it has been accessed. We do not make any attempt to find out the identities of the people visiting our website.

Use of Cookies by EFA

Like most websites we use cookies to help us give you a better service. They do lots of things including help you navigate between pages, telling us what device you’re using and which language version of a website you selected, so we can present our content in the best way possible. We also use Google Analytics to help us understand how our users interact with the website. It includes information about how users arrive at our site, where they are from and the pages they visit. If you continue to use our site you are agreeing to our cookie policy. You can, however, adjust your browser so that it does not accept cookies. This might negatively impact your experience of our website. You can also opt out of Google Analytics.

Third party websites

When our page is linking to third party websites we have no control over their cookie policy. We therefore suggest that you check their cookie policy for further information. By using EFA websites you acknowledge that you have read and agreed to the following terms of use and our Privacy Policy.

2. People receiving newsletters

EFA uses email and online newsletters to communicate with supporters and subscribers. For that purpose, we collect your name and email address. Our newsletters are sent to the people that have asked us to do so by actively subscribing through our newsletter facility or by asking us to include you via email, phone or giving us your business card, and to the people who fall under point 11.

3. People who engage with EFA through social media channels

If you post on EFA’s social media channels, mention EFA’s social media platforms or send us a private or direct message via social media we will assume you give permission for us to respond. Messages posted on our social media pages (including Twitter, Facebook, YouTube) are available publicly and we can’t take responsibility for those messages which are subject to the privacy policies of the application provider and the specific privacy account setting of the user. We may use messages posted on EFA social media pages to better understand our audiences, supporters and their concerns. As part of this, we may scrape, anonymise and aggregate information that users post on our social media pages. This information may then be published as a study or shared with partners. This will only be done in line with the privacy policies and terms and conditions of those platforms. We will respond to publicly available social media posts relevant to EFA’s issues where appropriate and within the permissions of those platforms.

4. People who sign up for EFA events

We use sign up pages for some of our activities, we use a third-party event registration software. These pages are hosted by efanet.org and clearly state the information collected to enable the delivery of that programme or event for that person. Depending on the nature and setting of the event, we might need to collect from you your full name, email address, employer and position, and if you need assistance with mobility. If the event is in a public setting, we might need to grant access to the building or facility requiring your arrival, nationality, passport details and date of birth. In events where food is offered, we give you the opportunity to communicate us your dietary requirements to accommodate the needs of people living with food allergies and any other requirement. In those events where we apply our reimbursement policy, we will request our reimbursement form duly signed and completed, including your bank account details to effectively proceed with money transfers.

5. People donating money to EFA or expressing an intent to donate in the future

If you donate money to EFA we will record your personal details which enable us to process your donation (for example if made by credit card or direct debit). This may include some or all of your: name, address, telephone number, email, amount of donation, reason for donation, bank details. We may contact you using these details in respect of your donation (for example to send an acknowledgement or receipt, to give notice of direct debit collections).

For internal work purposes and to enable our core work as a federation of patients’ associations

6. People who apply to work, have worked, or who work for EFA or are members of the Board

Information provided as part of an application for a job at EFA will only be used to process the application. Taking up references will only be done with specific permission of the job applicant. These information will be deleted seven months after the vacancy is fulfilled, to correspond with the duration of probation period.

Once someone is employed by EFA or becomes a board member, we hold data such as complete name, nationality, ID number, date of birth, family status, home address, personal email address, personal phone number, bank account information, photos, as well as information relating to their service. We use these data for management purposes only when they are needed for that person’s employment service or fulfilling the duty as Board Member. This personal information is kept secure to comply with Belgium employment and social security laws, for the duration described in these laws.

7. People among EFA Members and other patient associations

If you are part of an EFA Member, we might contact you and/or use your data regarding your membership including notices of our working meetings, communications requiring your action as an EFA Member delegate or simply national member, and in respect of EFA’s objectives. Our network is composed of allergy, asthma and COPD patient representatives who may or may not be patients themselves. We do not store data about people and patients’ health condition.

8. People who participate in EFA surveys and studies

Our project surveys pursue the development of new data important for patients and their associations. They require a great deal of personal and health information and they are generally ran by specialised and reputable third parties employed by EFA who comply with the highest data protection standards and ethics. They collect responses and treat them to be anonymised by default, unless you sign consent to have your personal contact details communicated to EFA so that we can contact you back. Health data collected from individuals in EFA multicounty projects and surveys is anonymised.

Surveys ran by EFA might ask for personal information, the purpose for doing so and how we use your data is made clear at the start of the survey. We may also use third-party software for data capture on questionnaires.

9. People who contact EFA

We will keep the personal information you are giving us (that is your name, phone number, email address, address and personal information) regarding your issue, request or complaint. We will only use the personal information we collect to investigate and respond to the person and to monitor the level of service we provide.

10. People who conduct activities with EFA

We work with a wide variety of people to deliver our mission and hold data relating to these individuals, the organisations they work for and the connections they have, or may have, with EFA. These relationships include those with: patients, researchers, healthcare professionals, freelancers and consultants; companies and organisations we have contractual relationships with; companies or organisations which have, or may have, shared interest in EFA’s related developments. Third parties having access to personal data hold by EFA are subject to a strict obligation of confidentiality. This concerns service providers we use, such as our website provider or our Secretariat Social. EFA will never proactively share personal information with a third party for any other reason without consent.

11. People who have a public or political mandate

We collect and process public information about people who are our advocacy target. This applies to policy makers and influencers including officials from the EU institutions and UN bodies, members of the European and national parliaments, staff from country representations, embassies in Brussels and ministries at national level.

SECTION 2: Use of your data

A. How long do we keep your data?

We keep your personal information for as long as EFA deems it necessary and/or for as long as required by the Belgian laws. You have the right to access the personal data we store about you, update your data, review it, or request for your data to be deleted as described in section 3.

B. How do we secure your data?

We do not sell your data to third-parties. In fact, EFA sells nothing, we are non-profit.

The data that we have collected are kept as paper files in our office, in our internal server, and in our digital customer management system, some of them secured by third parties. We use reasonable administrative, technical, personnel and physical measures to safeguard personal information in EFA’s possession against loss, theft and unauthorised access and use or modification. While we strive to protect your personal information, you will understand that we cannot guarantee the security of any information while being transmitted to us over the internet. Therefore, please do not submit sensitive personal information to us online unless you accept the security risks of doing so. We do not take any responsibility and we are not liable for any loss, misuse or transfer of your data from a third party in such cases.

Why do we use your data?

We collect personal information for a number of reasons, such as:

to comply with legislation and regulations;
to enter into a contract with you or take steps to enter into a contract with you;
to provide you with the services and/or information which you have signed up to or requested;
to enable you to participate in our activities as a volunteer, patient expert, event participants or other
to process any donation we may receive from you;
to ask you to help us raise funds or donate to our association;
to respond to a question or enquiry;
to send participation in surveys and research in order to use the results for statistical analysis to help improve our services and gather statistics on areas relating to allergy and airway diseases;
to be a speaker for us, where we may also use photos or a video in our website or other channels, with consent;
for internal record keeping, such as the management of feedback or complaints;
to maintain a list of people who have explicitly told us that they do not want us to contact them;
to analyse and improve our work.

Once collected, we may anonymise your data for activities relating to our legitimate interests, such as being able to collate statistical data to inform our activities, survey data or research.

We aim to ensure that all information we hold about you is accurate and kept up-to-date. If any of the information we hold about you is inaccurate and either you advise us or we become otherwise aware, we will ensure it is amended and updated as soon as possible.

We will only contact you for the purpose requested via the channel you request.

We do not send you any advertisement or marketing emails. However, we will retain details on a suppression list to help ensure we do not contact them. A person may ask for any personal information about them that we hold to be deleted and destroyed at any time but, please note, in that case we will have no record. There may also be times when we cannot delete data because of other laws or regulations. We will inform a person, if possible, if data cannot be deleted.

SECTION 3: Your rights

What are your rights?

You retain all your ownership rights when you share your data with us. However, by sending us your data you grant EFA the right to use it as per your request. You can always use the unsubscribe link present throughout our digital channels and mailings you receive.

You also have the right to request a copy of the information we hold about you by making a ‘subject access request’. We would give you a description of the data held; tell you why we are holding it; tell you who it could be disclosed to and let you have a copy of the information in an intelligible form. Once your identity is confirmed, we will respond within one month as required by the European General Data Protection Regulation.

If you wish to make a ‘subject access request’ please write to EFA, the controller of your data:

European Federation of Allergy and Airways Diseases Patients Associations

35 Rue du Congrès, 1000 Bruxelles, Belgium

This email address is being protected from spambots. You need JavaScript enabled to view it.

+32(0)2 227 27 12

EU Transparency Register Identification Number: 720047092329-73

You are also able to ask us to correct any mistakes in the information we hold or ask for the data to be deleted (assuming we have no other obligation to keep it; we would encourage you to let us use it for suppression purposes only).

THANK YOU FOR YOUR TRUST IN EFA.