Intended for U.S. use only
Your guide to help find answers about your child’s health.
RareNavigator 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 RareNavigator may process about you and why and how we use it.

RareNavigator is provided to you by the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease (the “Global Commission” or “we”). 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. It is co-chaired by Takeda Development Center Americas, Inc. ("Takeda"), Microsoft Corporation and EURORDIS - Rare Diseases Europe. For contact information, please refer to

On behalf of the Global Commission, the RareNavigator site provides tools, possible resources, and information intended to assist patients and caregivers throughout their diagnostic odyssey. It has a chatbot where parents/caregivers will be guided through a series of questions about where they are on the diagnostic journey to date with their child. The questions posed in the chatbot do not identify the child in any way. You can receive your printable, customized report which could include potential discussion points to raise with a healthcare professional, a list of possible resources for you to review and communities to connect with. The purpose of the questions is to provide users with possible resources and potential discussion points to raise with a healthcare professional; none of the information or materials provided serve as or establish a medical diagnosis.

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

Users who wish to submit questions will have the option to provide their 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. Users can also complete an optional survey about their experience using RareNavigator, which includes questions about the content of the website and where they are in their child's diagnostic journey. By submitting feedback through the optional survey, users are granting RareNavigator permission to use this information to improve its operations and content.

When a user visits the RareNavigator site, we will collect de-identified answers to questions posed on the chatbot. We will also automatically collect anonymous state, geographic and technical information, such as length of time spent on the site and time spent on the chatbot. Users can choose what site information we are able to collect by adjusting their cookie settings on the website. When users visit the site, RareNavigator will 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. RareNavigator has put in place safeguards 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.

For more detailed information on how the Global Commission processes personal data, please refer to the Global Commission’s Privacy Notice.