Global Commission

to End the Diagnostic Odyssey for Children with a Rare Disease

Global Commission Privacy Notice

Effective date of this privacy notice June 10,2021.

Your privacy and the protection of your personal data is important to us. This Privacy Notice explains the type of personal data the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease (the “Global Commission” or “we”) may process about you and why and how we use it.

The Global Commission is a multidisciplinary group of international experts dedicated to supporting pilot programs to address barriers in rare disease diagnosis with the ultimate goal of improving the lives of children. The Global Commission is co-chaired by Takeda Development Center Americas, Inc. (“Takeda”), Microsoft Corporation, and EURORDIS - Rare Diseases. For contact information, please refer to

This website provides information about the Global Commission, what we do, what resources are available, introduces our members and provides news and events.

Users who wish to submit questions will have the option to provide their name and email address. Should you contact us to report a problem or make a complaint or otherwise communicate with us, we collect information in order to resolve your query.

This website is managed by Takeda on behalf of the Global Commission.

When a user visits the Global Commission site, we may automatically collect anonymous technical information such as length of time spent on the site. Users can choose what site information we are able to collect by adjusting their cookie settings on the website. When users visit the site, the Global Commission may also automatically collect technical information such as usage data, browser type and version.

We may share your information with third-party vendors with whom we collaborate to fulfil the above purposes.

The sharing of your personal data (e.g., name, email address) may involve transfers to other countries. The data protection laws in these countries may not provide the same level of protection as your home country. Safeguards have been put into place to adequately protect your personal data in connection with such transfers, including contractual protections for which you may request additional information from us.

We will keep your personal data for as long as this website is active or until you request to have your personal data deleted.

Our use of your personal data as described above is based on serving the Global Commission’s legitimate interest to shorten the time to rare disease diagnosis.

Users have the right to request access to, rectification and deletion of your personal data or that its use be restricted. To exercise these rights please contact a Data Protection Officer who may be contacted at Additionally, in the United States, you may contact Takeda at 1-800-676-8975.

If you have a complaint about the way your personal data is being processed, you also have the right to contact the Data Protection Authority in your home country, where there is one.