Privacy Policy

Last updated April 5, 2024

EUMGA is registered as an Association Internationale Sans But Lucratif (AISBL), according to Belgian Law. Registration number: 0757.653.14 - 30-10-2020,

Rue Achille Chavée 52/02, 7100 La Louviere, Belgium

info@eumga.eu

Privacy Policy

This privacy policy for EuMGA (‘we’, ‘us’, or ‘our’), describes how and why we might collect, store, use and/or share (‘process’) your personal information when you use our services.

EuMGA is committed to protecting your personal information, being transparent about what we hold and ensuring that we use it in accordance with applicable laws concerning data protection.

Who are ‘you’?

In this privacy policy, whenever you see the word ‘you’, it refers to anyone external to EuMGA whom we have a relationship with, including but not limited to members, supporters, and fundraisers.

Questions or concerns?

Reading this privacy policy will help you understand your privacy rights and choices. If you do not agree with our policies and practices, please do not use our services. If you still have any questions or concerns, please contact us using the contact details above.

What type of information do we collect?

We receive, collect and store any information you enter on our website or provide us in any other way. We may use software tools to measure and collect session information, including page response times, length of visits to certain pages, page interaction information, and methods used to browse away from the page. We also collect personally identifiable information (including name, email,); payment details , comments, feedback, product reviews, recommendations, and personal profile.

Personal information provided by you

We collect personal information that you voluntarily provide to us. This could be by you filling in digital and/or paper forms, engaging with our services or events, participating in our social media accounts, donating to us, joining as a member, becoming a fundraiser or by corresponding with us in general.

Examples of the personal information we collect:

We hold names and titles, postal addresses, telephone numbers, mobile numbers, email addresses.
We record basic information about your myasthenia such as the type of myasthenia you have (general myasthenia, LEMS, CMS, Ocular etc) and the date when you were diagnosed.
If you are corresponding with us on behalf of a friend or relative who has myasthenia; we may record their name, their type of myasthenia and the date diagnosed when they were diagnosed.
We record factual case notes on any interactions or conversations with us, including any correspondence we have sent you and ones you have sent us.
What your preferred contact methods are (telephone, email, SMS and/or postal).
As part of our legal obligation for business accounting and tax purposes, we keep financial records on any payments you make to us. This includes donations, purchases, and service fees.
We record the purpose of any donations and any restrictions placed on them (for example, you may have specified your donation goes towards funding research).
Any EuMGA-hosted events or fundraisers you have attended online or in person.
Any feedback or special requirements that you may choose to give us.
The details of any complaints or incidents you may have submitted to us for investigation.

We will only ask for personal information that is appropriate to enable us to deliver our services. In some cases, you can refuse to provide your details if you deem a request to be inappropriate. However, you should note that this may impact our ability to provide some services to you if you refuse to provide information that stops us from doing so.

All personal information that you provide to us must be true, complete, and accurate, and you must notify us of any changes to such personal information.

Social Media

We are present on social media platforms such as Facebook, Instagram, X (formerly Twitter), and YouTube. On these platforms, users can engage in discussions, share information, and interact with one another. We want to make it clear that while we strive to create a safe and respectful environment within these groups, we are not responsible for the actions, content, or privacy practices of other users. It is important that you exercise caution and use your discretion when sharing personal information or engaging in discussions within these social media groups. We recommend reviewing the platform’s own privacy policies and terms of use to understand how your information may be processed.

We also display social media buttons on our website. When you click on any of those buttons, your Personal Data may be transferred to these companies and they may also set cookies or other tracking technologies on your browser. The privacy policies and terms of use of each of those companies govern the collection and use of your Personal data when you click on their buttons on our website.

Third-party Websites

Occasionally, we may advertise or provide links to third-party websites for fundraising, support, or other purposes. While we strive to only partner with reputable third-party websites, we cannot control or guarantee their actions or practices. We recommend that you review the privacy policies and terms of use of any third-party website before providing them with your personal information.

The above also applies to any donation processing platforms such as JustGiving or GoFundMe, or platform to promote call to action like change.org

Such websites operate independently from our association and will have their own privacy policies and procedures.

How do we collect information?

For example, when you send a message through a contact form, when you subscribe to our newsletter. When you conduct an action on our website, as part of the process, we collect personal information you give us such as your name, address and email address. Your personal information will be used for the specific reasons stated above only.

Why do we collect such personal information?

To provide and operate the Services;
To provide our Users with ongoing customer assistance and technical support;
To be able to contact our Visitors and Users with general or personalized service-related notices and promotional messages;
To create aggregated statistical data and other aggregated and/or inferred Non-personal Information, which we or our business partners may use to provide and improve our respective services;
To comply with any applicable laws and regulations.

How do we store, use, share and disclose our site visitors' personal information?

Our website is hosted on the Wix.com platform. Wix.com provides us with the online platform that allows us to display our services to you. Your data may be stored through Wix.com’s data storage, databases and the general Wix.com applications. They store your data on secure servers behind a firewall.

All direct payment gateways offered by Wix.com and used by our company adhere to the standards set by PCI-DSS as managed by the PCI Security Standards Council, which is a joint effort of brands like Visa, MasterCard, American Express and Discover. PCI-DSS requirements help ensure the secure handling of credit card information by our website and its service providers.

How do we communicate with our site visitors?

We may contact you to notify you regarding your account, to troubleshoot problems with your account, to resolve a dispute, to collect fees or monies owed, to poll your opinions through surveys or questionnaires, to send updates about our company, or as otherwise necessary to contact you to enforce our User Agreement, applicable national laws, and any agreement we may have with you. For these purposes we may contact you via email, telephone, text messages, and postal mail.

How do we use cookies and other tracking tools?

In general, the cookies which are initially placed on our Wix website may be categorized as essential cookies. If you wish to decline the use of cookies by our Site or if you wish to delete or authorize new cookies on your device, (i) in a first instance you can do so via your selection in our cookie banner and the Cookies Settings link in the footer of our website and (ii) you can also modify your browser settings in order to block the cookies or to alert you when cookies are sent to your device.

Cookies may be managed in different ways. Please refer to your browser’s instructions for further information on how to set or modify your browser’s settings:

If you disable cookies used by our Site, this may affect you when you browse the website (for example, you may not be able to view certain parts of the website or receive personalized information when you view the Site).

HOW LONG DO WE KEEP YOUR INFORMATION?

We will only keep your personal information for as long as it is necessary for the purposes set out in this privacy policy unless a longer retention period is required by law (such as gift aid declarations for tax purposes, accounting, or other legal requirements). When we have no ongoing legitimate business need to process your personal information, we will either delete or anonymise such information.

How can you withdraw your consent?

If you don’t want us to process your data anymore, please contact us at info@eumga.eu

Privacy policy updates

We reserve the right to modify this privacy policy at any time, so please review it frequently. Changes and clarifications will take effect immediately upon their posting on the website. If we make material changes to this policy, we will notify you here that it has been updated, so that you are aware of what information we collect, how we use it, and under what circumstances, if any, we use and/or disclose it.

Questions and your contact information

If you would like to: access, correct, amend or delete any personal information we have about you, you are invited to contact us at info@eumga.eu