Medics4RareDiseases’ Privacy Policy

At M4RD we care about rare. But we also care about your privacy. This Privacy Policy describes how your personal information is collected, used, and shared when you visit www.m4rd.org, contact us or sign up to our e-newsletter.

  • “we” or “M4RD” means Medics 4 Rare Diseases;
  • “you” means any person(s) about whom we collect non-personal and/or personal information

OUR PRIVACY PRINCIPLES

M4RD collects data for the following reasons:

  1. To allow us to engage with our members, stakeholders and the wider rare disease community with information and updates regarding services from M4RD.
  2. For administrative purposes, allowing interaction with the M4RD team.
  3. To understand the impact of our projects. This allows us to improve our services and subsequently the lives of people living with rare diseases.
  4. To share information and updates that further our charitable purposes.
  5. To raise awareness of M4RD, our events and activities.

We aim to contact you only with information that you have asked for, either by consenting to be part of our mailing lists, or by signing up for a specific project. In the latter case we will only contact you within the life of that project without your specific consent to do otherwise. You can opt out of receiving information at any time.

We will only collect data from you that is needed to deliver our work and aim to keep that data for a limited period.

We will never sell your data to a third-party organisation, and never share your information for marketing purposes. We will only pass it on to a third-party organisation where it is necessary to deliver our work (for example providing an event venue with a list of attendees). We will make it clear when we need to do this.

M4RD will take all reasonable care to protect your personal information through secure working practices and processes. In line with the GDPR we will provide you with a summary of information we hold about you upon request and will remove your information from our records upon request if we are not legally required to hold it.

The following information provides a detailed breakdown of all the data we collect, how we hold it and use it, and the reason behind it. If you would like to learn more about our privacy policy or our work, please contact us using info@m4rd.org at any time.

DEVICE INFORMATION WE COLLECT FROM WWW.M4RD.ORG

When you visit the website, we automatically collect certain information about your device, including information about your web browser, IP address, time zone, and some of the cookies that are installed on your device. Additionally, as you browse the website, we collect information about the individual web pages or content that you view, what websites or search terms referred you to the website, and information about how you interact with the website. We refer to this automatically-collected information as “Device Information”.

The website is powered by WordPress. 

HOW WE COLLECT DEVICE INFORMATION

‘Cookies’ are data files that are placed on your device or computer and often include an anonymous unique identifier. For more information about cookies, and how to disable cookies click here.

‘Log files’ track actions occurring on the website, and collect data including your IP address, browser type, Internet service provider, referring/exit pages, and date/time stamps.

‘Web beacons’, ‘tags’, and ‘pixels’ are electronic files used to record information about how you browse the website.

OTHER WAYS WE COLLECT YOUR INFORMATION

We collect basic information about people who sign up to M4RD webinars through Zoom including name, affiliation and email address.  Zoom’s privacy policy can be viewed here.  This information is collected only for the purposes of contacting attendees about the webinar and to collect feedback, unless explicit permission is given for other uses.  

Rare Disease 101 is delivered via Moodle. Moodle is a learning platform designed to provide educators, administrators and learners with a single robust, secure and integrated system to create personalised learning environments. It is downloaded to M4RD’s own server and so only limited members of the M4RD team have access to the information you provide when you sign up and any progress data. However, if you wish you can access their privacy policy here. The information that you provide when you sign up to Rare Disease 101 is required for the following purposes:

  • To enable you to have a secure user account that you can revisit over time.
  • To enable the M4RD team to know who is using the platform in order to track its use and improve on this service.

You can update your preferences on Rare Disease 101 by logging on and clicking on your account name. If you would like help to do this or to delete your account please contact us on info@m4rd.org so that we can arrange this.

In the event that M4RD reimburses expenses for an individual attending or assisting with an event or project, we will collect personal information to process such payments.  We will securely store this information in order to meet the needs of our accounting processes.

We hold personal information about our staff, trustees and volunteers, including recent job and volunteer applications.

WHAT HAPPENS TO YOUR PERSONAL INFORMATION WHEN YOU CONTACT US?

When you contact us via email, phone or social media we will keep contact data so we can fulfil your enquiry. Or to take a course of action we have agreed with you. We only collect data that you have given us which may include: your name, your email address, your telephone number, where you work, your field of work, how and why you got in contact with us or events you have attended.  M4RD’s email accounts are provided by Google, where all email messages and addresses are stored.  You can view Google’s privacy policy here.  All emails and associated details may be retained in Google Mail for a period of up to 3 years before being deleted.

STORING YOUR PERSONAL INFORMATION

We store all our data on the GoogleDrive attached to the M4RD GSuite account. This service allows us to store all our data in ‘The Cloud’ rather than on one device or as physical copies in a locked office. Only relevant members of the M4RD board or staff have access to the Drive. All of those who have access to the drive are required to have 2-step-verification for logging in to ensure the safety of your personal information. For more information on Google Cloud’s privacy policy click here.

HOW LONG DO WE KEEP YOUR PERSONAL INFORMATION?

We only keep your personal information for as long as necessary. We will also permanently delete your data if requested by yourself. You can request what data we have stored about you and to have it amended or deleted by contacting us using the details at the bottom of this page.

HOW DO WE USE YOUR PERSONAL INFORMATION?

When in line with the preferences you have shared with us, we use your information to provide you with information or advertising relating to rare disease events, resources and opportunities. Our e-newsletter is sent to all those who have opted in to receive it. We may also contact you individually in order to highlight some specific opportunities in your particular area or we think will be of particular interest to you.

We use the Device Information that we collect to help us screen for potential risk and fraud (in particular, your IP address), and more generally to improve and optimise our website (for example, by generating analytics about how our users browse and interact with the Site, and to assess the success of our marketing and advertising campaigns).

SHARING YOUR PERSONAL INFORMATION

Device Information is shared with Google Analytics to help us understand how our visitors use the website. You can read more about how Google uses your personal information here. You can also opt-out of Google Analytics by following this guidance from Google.

We occasionally send out an e-newsletter to promote events, news and opportunities for medical students and doctors in training. This is powered by MailChimp who store your personal information including name and email address. They also use device information in order to analyse the success of the campaign and to measure engagement by the audience. All e-newsletters that you will receive provide the opportunity to unsubscribe with an easy-to-use button at the bottom of the email. For more information please view MailChimp’s privacy policy here. If you have signed up for the e-newsletter but otherwise had no other contact with M4RD we will not use or store your data other than in accordance with your preferences indicated via Mailchimp.

We would love medical students and doctors in training to connect with each other in order to spread the word about what we’re doing and the relevance of rare diseases in the medical world. To do this we may occasionally make links between our members. We will not pass on your personal information to anyone for this purpose without requesting your permission first.

Finally, we may also share your Personal Information to comply with applicable laws and regulations, to respond to a subpoena, search warrant or other lawful request for information we receive, or to otherwise protect our rights.

DO NOT TRACK

Please note that we do not alter our Site’s data collection and use practices when we see a Do Not Track signal from your browser.

ACCESSING YOUR PERSONAL INFORMATION STORED BY M4RD

If you would like to know what personal information we hold about you and to ask that your personal information be corrected, updated, or deleted please contact us through our Contact Page.

We will then provide you with the following information:

  1. What personal information is stored
  2. The purposes for which your data is being processed
  3. Who has access to your data

Additionally, if you are a European resident we note that we are processing your information in order to fulfil contracts we might have with you, or otherwise to pursue our legitimate business interests listed above. Additionally, please note that your information will be transferred outside of Europe, including to Canada and the United States.

CHANGES TO THIS PRIVACY POLICY

We may update this privacy policy from time to time in order to reflect, for example, changes to our practices or for other operational, legal or regulatory reasons.

CONTACT US

For more information about our privacy practices, if you have questions, or if you would like to make a complaint, please contact us by e-mail, using the contact page or by post using the details provided below:

℅ Analogue Wonderland, Unit 32 Basepoint, Cressex Enterprise Centre, Lincoln Road, High Wycombe, Buckinghamshire, HP12 3RL