RARE GURU: When diagnosed with a rare

Rare Guru:

GET TO KNOW THE TAMPA FAMILY THAT CREATED AN APP TO CONNECT PEOPLE WITH RARE DISEASES

by Laura Byrne

BYRNE:Tell us about Rare Guru and what inspired its creation? BARROW: My daughter, my mother and I were all diagnosed with a rare genetic metabolic bone disorder in 2019 called Hypophosphatasia (HPP). There are only a few hundred people who are currently diagnosed with HPP in the United States. My daughter Claire’s diagnosis was especially hard for her to process because she couldn’t find any other teens that had HPP. She felt isolated, anxious and struggled to find someone else her age with HPP to talk to. She came up with the idea to create a free app to instantly connect patients, caregivers and teens with rare diseases or chronic conditions, or those in search of a diagnosis.

BYRNE:How have you been able to connect people with resources so far? BARROW: The RareGuru app helps patients, caregivers, parents and teens make meaningful connections with others facing a similar health journey. Users across the globe are matched on over 7,000 diagnoses and 20,000 symptoms (provided by the US Genetic and Rare Diseases Information Center (GARD)) and are able to connect with their matches to give support and share health resources.

BYRNE:Knowing you are helping people find answers to their conditions, how does that make you feel? BARROW: I am proud of my family for turning our struggle to find information and resources on our rare diagnosis into something that is already helping thousands other families with rare diseases and chronic conditions avoid that same struggle. BYRNE:Why was it so important for your family to launch Rare Guru? BARROW: Building an app during a global pandemic was not easy, but my husband Bennett and I felt it was important to show Claire (and her brother Hill) that we could make something positive come from our rare diagnosis.

BYRNE:How has the pandemic impacted you and some of your clients? BARROW: When you have a rare diagnosis, there are only a handful of doctors in the country who may be familiar with your diagnosis. Patients must frequently travel hundreds, if not thousands, of miles from home for adequate care. Shockingly, most states do not allow out-of-state doctors to practice medicine via Telehealth appointments. Patients who have been unable to travel out of state to see specialists have gone months without treatment during the pandemic with no end in sight. BYRNE:Heather, you also helped launch High Risk Hope. Why is it so important for you to help others who are experiencing situations you have gone through like the NICU and the search for answers with a rare disease? BARROW: Connecting people with others in similar health circumstances, whether it is surrounding the premature birth of a child or a family member’s rare diagnosis, is extremely powerful. There are over 25 million people in the United States with one of 7,000 rare diagnoses. However, with so few people diagnosed with any given rare disease, they are underfunded and widely unknown by the medical community. As a result, the average time it takes for a patient with a rare disease to receive an accurate diagnosis is almost five years (it took our family 12 years.) Finding a knowledgeable medical team and treatment plan after a rare diagnosis often takes much longer. The RareGuru app is like a bullet train for the rare disease community, enabling them to fast forward through the typical roadblocks surrounding a rare diagnosis.

BYRNE:Anything else you want to add? BARROW: If you have a rare disease or chronic condition, you are not alone. Connect with others in your specific RareGuru community by visiting www.rareguru.com to download the free app on the iOS App Store or Google Play.