RareGuru | Rare Disease App

RareGuru will launch a new free app for iOS and Android mobile devices globally in April of 2020. 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. 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. 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. 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.