RareGuru Overview

Heather Barrow and her daughter Claire were diagnosed in 2019 with Hypophosphatasia, a rare genetic metabolic bone disorder. The Barrow family felt isolated and helpless as they struggled to find information and resources on their rare disorder. They were forced to become the experts or Gurus, of Hypophosphatasia. The Barrow family created RareGuru to connect and empower patients, caregivers, teens, and parents with rare diseases, disorders, and syndromes across the globe. Learn more here.

RareGuru is an app that helps caregivers, parents, and patients age 13 and older with a rare (or non-rare) diagnosis make meaningful connections with others facing a similar health journey. RareGuru users can connect easily with other users that have the same conditions, are experiencing the same symptoms or using similar treatments. Create individual or group messages with your connections to share personal stories and health data to support one another and obtain new knowledge on your shared diagnosis.

Click here to check out a short video overview about RareGuru and what our community has to offer!

RareGuru was founded on five fundamental values, which are the driving force behind everything we do within the RareGuru App and website. They are:

• Impartiality - RareGuru believes each of the 7,000+ rare (and non-rare) diseases, disorders, and syndromes (“diseases”) are equally important, and we do not play favorites! That means the rarest disease will receive the same amount of time, energy, and dedication from the RareGuru team as the most common disease.
• Innovation - Information in the rare disease community is not static, with new rare diseases, treatments, research, and advancements being made every day. RareGuru is at the forefront of this groundbreaking progress, bringing the most up-to-date information on every disease to your fingertips.
• Trust - Building and maintaining the highest level of trust with, and amongst, users is RareGuru’s most valuable asset. RareGuru will always have our users’ best interests at heart.
• Safety - Because teen and adult RareGuru users connect and share personal health information, safety within the App comes first. RareGuru will not tolerate any actions that jeopardize the safety or emotional well-being of a RareGuru user.
• Transparency - RareGuru is committed to openly share how we use information collected from users, generate revenue, and form partnerships between other stakeholders in the rare disease community.

RareGuru users have the option to make their profile private or public. RareGuru teen user profiles, even those designated as “public”, are only viewable by other teen users age 17 and under. Read our full Privacy Policy to learn how your information is used.

We strive to ensure RareGuru is a safe and enjoyable place to make safe authentic and empowering connections. If you ever encounter a user who you feel has violated our Community Guidelines, please let us know so that we can take action.

There are three different ways to report or block a user on RareGuru - via their profile, and via a conversation.

To report someone from your Recommended Connections on the Home screen, please follow these steps:

1. Look to the top right corner of the match card and tap the  . . .
2. Click "Report this person" or "Block this person"
3. Blocking a user requires no further action. If you are reporting a user, follow the prompts to file your confidential report.

To report someone from their profile, please follow these steps:

1. Scroll to the top of their profile and tap the  . . .
2. Click "Report this person"
3. Blocking a user requires no further action. If you are reporting a user, follow the prompts to file your confidential report.

To report a user from the Messages menu, please follow these steps:

1. From your conversation with the user, tap on the 3 dots in the top right-hand corner.
2. From here, tap “Block & Report”.
3. Blocking a user requires no further action. If you are reporting a user, follow the prompts to file your confidential report.

When reporting a user, be sure to specify the reason for the report. You can share as much or as little information as you feel comfortable with, but the more information we have, the easier it is for us to support you and take action. Once we receive the report, our moderation team will review it as soon as possible. Due to privacy guidelines, we can’t always reveal the results of a report, but please know that we take every report seriously and handle each case with care.

Read our Community Guidelines and Terms of Service for additional information. The safety of our RareGuru community is our top priority, and we want all users to feel comfortable and empowered feel free to reach out to our team if you have additional questions; we’re here for you!

Read our full Privacy Policy to learn how your information is used.

RareGuru is free, and always will be free to download and access!

In the future, we will be adding optional premium paid features to enhance your RareGuru experience. RareGuru also may feature advertisements on our website, and within the App.

You can unblock a user anytime in your profile settings. Go to your profile page and click the settings gear. Click "Privacy Settings" to view a list of the users you have blocked. Click on the user you wish to unblock and click the "Unblock" button beneath their name. The user is then unblocked and you can resume normal communications with him/or her if you are connected.

User Matching

Other users you have been matched with (based on your match criteria) can see your:

• Name
• User status (patient/caregiver/both)
• Age
• Shared diagnoses
• Location
• Shared symptoms
• When you were last active on the app

User Profiles

RareGuru users can share as much or as little information as you are comfortable with on your profile, and decide what information is viewable by other RareGuru users. When you download the App and sign up for an account, you have the option to make you profile private or public. If you are interested in sharing your information more broadly, you can make your profile public. Note: RareGuru teen user profiles, even those designated as “public”, are only viewable by other teen users age 17 and under.

If you are a public user (age 18 and older), all of the information you have elected to share on your profile will be viewable by any other RareGuru user.

If you are private user, your full profile will only be viewable by RareGuru users you have matched with and chosen to connect to through the App matching function.