Last update 24 May 2018
This privacy notice has been compiled to help you understand why we ask you for your personal information when you use one of our websites and how we will store and use this information.
Keeping your information safe and private is very important to us. All our services are designed with privacy and security in mind.
This privacy notice has been compiled by European Liver Patients' Association, international, non-profit association based in Belgium.
For the purposes of this privacy notice, we are acting as the data controller as defined by the Data Protection Act 1998 and the EU General Data Protection Regulation 2016/679.
Who is this privacy notice for?
This privacy notice is for all users of our website. It also covers usage of our mobile apps, news subscribers to our email bulletins and our individual donors.
What information do we collect?
Personal information is any information that can be used to identify you. For example, it can include information such as your name, date of birth, email address, postal address, telephone number and credit/debit card details.
We collect personal information when you contact us, register with us, order products and services, make a donation to us, or otherwise give us personal information.
How we collect information about you
Our websites and apps are available to users without registration, and wherever possible we limit the amount of data we collect from users. We collect personal information in the following ways:
Newsletter sign up
By providing your email address, your first name and your last name, you can sign up to receive email updates from ELPA. Signing up you will receive our weekly, monthly, quarterly and annual report.
We will use your email address only to send you the emails you have requested.
You can unsubscribe from any of our emails at any time by sending us an e-mail in which you request your e-mail address to be removed from the recipients list.
Oral request to receive information about ELPA activities
Sometimes during different events and conferences our partners, stakeholders and other interested persons ask orally to receive the latest updates about ELPA activities. ELPA team adds them directly onto the list of the recipients of ELPA newsletters upon this request. These details are used only for sharing different ELPA newsletters.
You can contact ELPA via our online contact forms. On these forms we will ask for your name, email, and message. These details are sent to the ELPA team by email. Your details will only be used to respond to your individual message.
Occasionally we host event registration facilities on our website. Users registering for an event will be asked for a range of personal information, which might include:
- Contact details
- Document number
- Travel information
This information is only collected and processed for the purpose of the specific event registration.
Personal information is never held on any of our cookies.
You can choose to have your computer block some or all cookies for you. You do this through your browser settings. Each browser is a little different, so look at your browser's Help menu to learn the correct way to modify your cookies.
How do we store your data?
The personal data you provide is stored in a secure hosting environment based in the EU. We employ a range of technology and procedures to ensure that this data is secure, including where appropriate, encryption, anti-virus and anti-malware software, intrusion detection, company-wide data usage policies, and security and privacy staff training.
How long will you keep my information for?
We will keep your data for as long as we are required to provide a service to you. For example, we will retain your email address for as long as you are subscribed to one of our newsletters.
Reviewing and updating your data
You can update the information we store on your behalf by contacting us and making a Subject Access Request.
In line with the GDPR regulations, you have the following rights:
The right to be informed
You have the right to be informed why and how we collect your personal data, how we will use this information, who we share it with, what are the security measures we take to protect this information and what are your individual rights. We will publish this information in this Privacy Notice.
The right of access
You have the right to access the information we hold for you by making a Subject Access Request by contacting us.
The right to rectification
You have the right for inaccurate or incomplete data we hold to be updated. You can make a request to have your data updated by contacting us using the details at the bottom of this Privacy Notice.
The right to erasure
You have the right to be forgotten at any point by contacting us or emailing . At your request, we will remove all the data we have for you which we are not required legally to retain.
The right to restrict processing
You have the right to restrict processing when you have exercised one of the above rights and it may take some time to process that request. For example: when you contact us to update your details you have the right to request restriction until your details are updated.
Right to withdraw consent
For the processing activities where we have asked you for consent, you have the right to withdraw this consent at any point by clicking on the unsubscribe link in any newsletter email we send you, or by contacting us.
The right to object
You can object to the processing of your personal data at any point by contacting us. There may be instances where we may not be able to fulfil those requests, but we will provide you with an explanation when replying back to you.
Right to not be subject to automated decisions and profiling
We do not run automated decision making or profiling.
Right to data portability
If you have provided us with your personal data with consent or under the contact obligations, you have the right to request the data you have provided to us in a machine-readable format should you decide to move to another data controller.
Sharing your data with partners
We will not share your personal data with any other company or organisation without your express consent. Typically, data is only shared when conducting joint projects, such as events run in conjunction with other organisations.
Links to other websites
On our website there are lots of links to other websites. This privacy notice does not cover these links. We encourage you to read the privacy statements on the other websites you visit.
Changes to ELPA Privacy Notice details
The date of the most recent version will appear on the top of this page. From time to time we may update this Privacy Notice, please review it each time you submit personal information. If we make any significant changes to this notice we will post a prominent update on our websites.