RARE Daily

App Helps Rare Disease Patients Find Others with the Same Condition

May 6, 2020

Shortly after Claire Barrow was diagnosed in 2019 with hypophosphatasia, a rare, genetic disorder that causes abnormal development of bones and teeth and leaves them prone to fracture and deformity, she tried to learn about how it would affect her.

Claire, who is 13, was diagnosed a month after her mother was diagnosed with the condition. She was having a hard time coming to terms with what having the disease meant for her future. When Claire tried to learn about the condition, she found that her mother or information available online couldn’t give her the answers she sought about what being a teenager with hypophosphatasia was like. That’s when her mother gave her some tough love.

“My husband and I told her, and what I was really telling myself,” said Heather, “is that, ‘We found out about this and it’s not what anybody would want to have, but you need to stop dwelling on being diagnosed with it and find something positive.’”

Claire and her brother Hill liked to watch Shark Tank, the reality TV show where entrepreneurs pitch investors, and last summer they decided to pitch their parents on an idea Claire had. They told their parents that they should create an app to help rare disease patients with the same conditions connect with each other.

The family was still trying to deal with finding doctors and developing a treatment plan, but the kids persisted. As Heather and her husband Bennett talked, they decided it would not only be good for Claire, but also for the whole family, and could help others experiencing the same challenges they were.

“We talked about it and thought this would be a great outlet for her and for us to bring something positive from this, not just for people with hypophosphatasia, but help other families not have to go through years and years of getting turned away by doctors, and trying to find answers,” said Heather, “by connecting patients who know about their disease with each other so they could share information about what they are doing that works and the doctor that they are seeing.”

Last week, the RareGuru app launched for iOS mobile devices. The app, which is free, is available in the United States, Canada, Australia, New Zealand, Ireland, and the United Kingdom. An Android version is expected to launch later this month. It is designed for people age 13 and older.

Patients and caregivers can use the RareGuru app to connect with other users that have the same conditions, are experiencing the same symptoms, or using similar treatments. Users can create individual or group messages with connections to share personal stories and health data to support one another and obtain new knowledge on shared diagnoses.

Because the app can connect users not only based on disease, but also on symptoms, it is intended to be useful to people who have not yet received a diagnosis, as well as people who may face common issues.

Claire, who said she has dealt with anxiety and found it helpful to talk to friends, pushed her parents to include mental health symptoms in the app as well.

If a RareGuru user is matched to another user, they will see their name, age, status (patient/caregiver/both), shared diagnosis, shared symptoms, location, and when they were last active on the app. Users are free to share as much or as little information as they like in their profiles.

The Barrow family founded RareGuru in August as a for-profit company and self-funded the development and launch of the RareGuru app. Claire’s father Bennett is CEO of RareGuru and Heather is COO. Heather said the company will not sell data. Instead, RareGuru expects to rely on sponsorships to eventual generate revenue. While the app will remain free, the company said it may add optional premium paid features in the future. The company donates 10 percent of its net proceeds to rare disease charities.

Claire is still hoping to find someone else her age who has hypophosphatasia, but it’s early days for the app.

“It’s inspiring to see my family and me have this idea and go through with it instead of having it and saying, ‘It’s a good idea and maybe we’ll do something in the future and never get to it,” said Claire. “For the hopefully thousands of people it reaches, I hope it can help them.”

Photo: Heather and Claire Barrow

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