Global Mito Map Privacy Notice
22 Jun, 2026
Last updated: 19th June 2026
Who We Are
The International Mito Patients (IMP) operates the Global Mito Map as part of World Mitochondrial Disease Week.
This Privacy Notice explains how we collect, use, and protect personal information submitted through the Global Mito Map.
What is the Global Mito Map
The map (referred to as the Global Mito Map, or Mito Map) is a visual representation of some of the different mitochondrial disease-related activities, organisations, patient stories and research projects that are happening around the world. The intention of the map is to connect isolated stories and create a sense of increased community and collective action. The map also shows us the places where not enough is happening – areas where patients are represented or where research is not happening for instance. It is not a complete picture of mito around the world, but it starts to connect us all and help those who feel very isolated.
What Information We Collect
Note that although we collect this information, we will not publish any personally identifiable information. Some of the personal information (such as surname, email address etc) is to help us stay in touch with you. These details will never be published.
Depending on the category selected, we may collect:
- Name
- Organisation or institution name
- Email address
- Country, city, and location details
- Event information (such as location, time, registration links or contact information)
- Research project information (such as project name, project goal, website and lead research partners)
- Personal stories and experiences (these will be under first name only and will contain no information which will make you easily identifiable. Stories are published under first name and country only).
- Photographs, images, logos, or other uploaded content. Please be sure you have permission to share anything you upload.
- Website and social media links
Providing this information is voluntary.
How We Use Your Information
We use the information you provide to:
- Review and manage submissions to the Global Mito Map
- Display approved submissions on the Global Mito Map
- Promote World Mitochondrial Disease Week and related awareness activities
- Share approved content through the IMP website, social media channels, newsletters, and campaign materials
- Contact you if we need clarification regarding your submission
Publication of Submitted Content
Please be aware that information submitted for inclusion on the Global Mito Map may be publicly visible.
By submitting content and selecting the relevant consent checkbox, you confirm that:
- The information provided is accurate
- You have permission to share any information, photographs, or other materials submitted
- You understand that approved submissions may be published on the Global Mito Map, IMP website, social media channels, and related awareness materials
Legal Basis for Processing
We process personal information based on your consent, which is provided when you submit information through the form and agree to the relevant consent statements.
You may withdraw your consent at any time by contacting us using the details below.
How Long We Keep Your Information
We will retain submitted information for as long as it remains relevant to the Global Mito Map, World Mitochondrial Disease Week activities, or related awareness initiatives.
If you would like your submission removed, please contact us and we will review your request.
Sharing Your Information
We do not sell your personal information.
Information may be shared with service providers who support the operation of our website, map platform, or campaign activities. These providers are required to protect your information and only process it on our behalf.
Your Rights
Depending on your location, you may have rights to:
- Request access to your personal information
- Request correction of inaccurate information
- Request deletion of your information
- Withdraw consent
- Object to certain types of processing
To exercise any of these rights, please contact us.
Contact Us
If you have any questions about this Privacy Notice or how your information is used, please contact:
International Mito Patients (IMP)
Email: jodebry@mitopatients.org
Website: www.mitopatients.org
Changes to This Privacy Notice
We may update this Privacy Notice from time to time. Any updates will be posted on this page.