Intended for U.S. use only
Your guide to help find answers about your child’s health.
ABOUT

RareNavigator was created with the goal of providing parents and caregivers with customized tools, resources and possible communities as they work with their child's physician(s) to consider rare disease as a possibility and take the next steps in seeking appropriate care. RareNavigator is not intended to be diagnostic or offer treatment plans, nor is it intended to replace the guidance of a healthcare professional.

RareNavigator was created by:

Frequently Asked Questions
Who should use RareNavigator?

RareNavigator is for questioning parents, or, those parents or caregivers whose child has ongoing health and/or developmental issues, but doctors are not certain of the underlying cause. This could also include parents who are concerned about their child's health and development, but their child hasn’t had a formal/correct diagnosis. For a list of common signs of rare disease click here.

How does RareNavigator work?

RareNavigator may be able to help guide parents and caregivers to find information about their child’s health using a series of questions through Microsoft's healthbot technology. After completing the questions, parents may receive a list of possible resources, communities to connect with, and tools. The purpose of these questions is to provide parents with resources and potential discussion points to raise with a healthcare professional. RareNavigator is not a diagnostic tool, but is meant to help parents have informed discussions with physicians, with the ultimate goal of helping to shorten the time to a possible diagnosis for their children.

What does RareNavigator provide?

RareNavigator provides customized tools, possible resources and communities.

Who do rare diseases affect?

There are more than 6,000 known rare diseases worldwide.i,ii An estimated 300+ million people globally are living with a rare diseaseiii,iv with 50% typically occurring in children.ii,v Most rare diseases are geneticvi and 70% of those start in childhood.iii

What is a rare disease?

Rare diseases are diseases that affect a small number of people compared to the general population. Most rare diseases are genetic, and are present throughout a person's entire life, even if symptoms do not appear immediately. There are approximately 6,000 different types of rare diseases and disorders, with more being discovered.i,ii

Who created RareNavigator?

RareNavigator is brought to you by the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease , co-chaired by Takeda, Microsoft and EURORDIS. This multidisciplinary group of international experts are supporting pilot programs to address barriers in rare disease diagnosis with the ultimate goal of improving the lives of children. The Global Commission provides links to patient and clinical resources, a calendar of events in the rare disease community, member news and updates relevant to the diagnostic journey.

Today, it can take an average of five years to get an accurate diagnosis of a rare disease, even in countries with sophisticated health systems.vi,vii In 2018, Takeda, Microsoft and EURORDIS-Rare Diseases Europe joined forces to launch the Global Commission and bring the rare disease and technology communities together to help address this problem. The goal of the Global Commission is to inspire concerted action and mobilize diverse actors – within and outside the health field – to work collaboratively toward a shared ambition.

RareNavigator was created by the Global Commission.

What is the “diagnostic odyssey?”

The diagnostic odyssey is a succession of steps, starting from the onset of symptoms to diagnosis of the disease. The average length of time from symptom onset to an accurate diagnosis of a rare disease is about five years or longer.vi,vii Rare diseases can often go undiagnosed because patients, families and physicians have limited awareness of the disease and rare disease symptoms may not always be evident to healthcare providers who have never encountered the disease. Symptoms may be hidden behind more common illnesses and initially, may appear to be of only minor concern. Delays in diagnosis may lead to inappropriate disease management as well as disease progression, and a misdiagnosis may lead to additional interventions later deemed to be inappropriate given the underlying disorder.

Can I or my child be identified by answers provided in the chatbot?

No, the answers are collected but are de-identified.

How will the information I provide be used?

We do not require personal information (name, e-mail, etc.) for parents/caregivers using RareNavigator. Users will have the option to contact us via e-mail if they choose or if they would like to receive future communications and updates. If you choose to contact us, please do not share any personal medical information, as RareNavigator is not intended to be diagnostic or offer treatment plans.

If you’d like to learn to more about our data privacy notice, please click here.

I don’t have a child with a rare disease, but know someone who might. How can I help them?

We encourage you to share RareNavigator with family or friends by sending them the link to our website. Or, you can copy this into an email or text:

“Hi, I just discovered RareNavigator and think you’d be interested in learning more. Visit RareNavigator.com.

Can RareNavigator help offer a possible diagnosis for my child?

RareNavigator is not intended to be diagnostic or offer treatment plans. RareNavigator was built solely to help guide parents to find actionable next steps on their child's diagnostic journey.

Please do not share any personal medical information as RareNavigator is not intended to be diagnostic or offer treatment plans. RareNavigator was built solely to help guide parents to find actionable next steps on their child's diagnostic journey.

We value your feedback and want to help parents and caregivers like you as much as possible. If you would like to tell us more about your experience using RareNavigator, please complete this survey. If you'd like to learn more about our data privacy notice, please click here.

  • iKlimova B, et al. Curr Med Chem 2017;24(29):3153–8
  • iiBick D, et al. J Med Genet 2019 Apr 25. pii: jmedgenet-2019-106111. doi: 10.1136/jmedgenet-2019-106111. [Epub ahead of print]
  • iiiKlimova B, et al. Curr Med Chem 2017;24(29):3153–8
  • ivKuiper G-A, et al. Orphanet J Rare Dis 2018;13(1):2.
  • vWakap S, et al. European J of Human Genetics 2019; 28, 165–173
  • viVandeborne L, et al. Orphanet J Rare Dis 2019;14(1):99
  • viiMuir. E., et al. The Rare Reality 2016;
  • viiiBlack, N., et al. Diagnostic odyssey for rare diseases: exploration of potential indicators 2015.
Questions? Send us a message using the form below.
Do you have further questions? Send us a message!
Please do not share any personal medical information as RareNavigator is not intended to be diagnostic or offer treatment plans. RareNavigator was built solely to help guide parents to find actionable next steps on their child's diagnostic journey.
We value your feedback and want to help parents and caregivers like you as much as possible. If you would like to tell us more about your experience using RareNavigator, please complete this survey.
If you'd like to learn more about our data privacy notice, please click here.
Your message has been sent!
Thank you for getting in touch. Your input is very important to us and we will get back to you soon.
BACK TO HOMEPAGE