TAMPA, FL — RareGuru, LLC, an emerging leader in the rare disease sector, has launched a new free app for iOS mobile devices in the United States, Canada, Australia, New Zealand, Ireland, and the United Kingdom. The Barrow family founded RareGuru in 2019 after Heather Barrow, 40, and her daughter Claire, 13, were diagnosed with hypophosphatasia, a rare genetic metabolic bone disorder where the body does not produce the enzyme alkaline phosphatase (ALP) needed to form healthy teeth and bones. The Barrows felt isolated and helpless as they struggled to find information on and treatment options for their rare disorder and had to quickly become experts on hypophosphatasia. After looking in vain for an app to help meet other families with hypophosphatasia, Claire convinced her parents to build an app to connect and empower every person who has a rare disease.
The RareGuru app helps caregivers, parents, and patients 13 years old and up 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. 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.
A disease is defined as rare in the United States when it affects fewer than
200,000 Americans at any given time. Currently, there are an estimated 25 to 30 million Americans, almost one in ten, living with one of the 7,000 identified rare diseases, disorders, and syndromes. Because so few people have a specific rare disease, the mainstream medical community often overlooks this population when researching treatments and educating medical students. As a result, the average time it takes for patients to receive a rare diagnosis is 4.8 years, and 95% of rare diseases lack an FDA approved treatment. People facing a rare disease diagnosis for themselves or a family member struggle to find doctors who have any knowledge of their disease. They rely heavily on others with shared diagnoses as they are often the experts, or gurus, of their rare disease. The current archaic avenues of connection mean it could take months (if ever) for people afflicted with the same rare disease to find one another.
The RareGuru mobile app provides a free, simple, real-time, and easily accessible way for every member of the rare disease community to connect with others who share similar diagnoses or symptoms.
“We’ve created a tool that empowers people of all ages with a rare disease to take back control of their health and future,” said Heather Barrow, RareGuru Co-Founder, and Chief Operating Officer. “Members of the rare disease community are no longer constrained by the lack of doctors, resources, and information on our rare diseases. RareGuru delivers the most knowledgeable and motivated experts on your rare disease directly to your mobile device.”
Innovative features on RareGuru’s mobile app include:
• Rare Disease Database. The RareGuru app uses its disease database to match users and includes real-time information on to 7,000 rare (and 500 non-rare) diseases and more than 21,000 symptoms. The database is regularly reviewed and updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.
• Multiple User Types. Many rare diseases are genetic, and several family members may have the same disease. Users can select to be a patient, caregiver, or both.
• Profile. Users can share as much or as little information as they are comfortable with on their profile and decide what (if any) information is publicly viewable by other users. Teen user profiles are always private and only viewable by users 13-17 years old.
• Matching. Users are matched based on an algorithm that determines how closely their diagnosis and symptoms align with other users’ and is filtered to incorporate user-specified preferences like location, age, and user type. Each user then determines whether to connect with each other. Teen users 13 -17 years old can connect and message only with other teens. Adults cannot match with, or view profiles of teens and vice versa.
• Global Disease Map. Users can search the global disease map to find out how many other users share their diagnosis in any location.
• Messaging. When two or more users mutually match, they can message each other through private individual and group chats.
• Symptom Tracker. Users can track symptoms, take notes, and export data trends to share with doctors and specialists.
• Charitable support. RareGuru donates 10% or more of net proceeds to charitable organizations serving the rare disease community. Users have the ability to designate their favorite charity during onboarding.
“The journey for caregivers of those living with a rare disease is often a forgotten one. RareGuru will allow millions of fellow caregivers, like myself, to connect, share, and support one another,” said Bennett Barrow RareGuru Co-Founder and Chief Executive Officer. “Together we will become even greater advocates for our loved ones affected by a rare disease while helping each other heal in the process.”
About RareGuru
There are 400 million people living with 7,000 rare diseases, disorders, and syndromes in 195 countries. RareGuru is the one App that connects them all. To learn more, visit http://www.rareguru.com/media-kit