TeleRare Health™ Announces Launch of National Virtual Clinic for Rare Disease Patients

The Minneapolis firm is offering video visits for diagnosis & longitudinal care across the Rare Disease Spectrum for 30 million Patients in the USA

MINNEAPOLIS, April 30, 2024 /PRNewswire/ -- 8:00a (CET) April 30, 2024 - TeleRare Health™ launched today, a virtual clinic for Rare Disease patients and their families.

In the United States, a disease is considered rare if it affects fewer than 200,000 Americans.  According to the National Institutes of Health (NIH), there are approximately 10,000 rare diseases, afflicting over 30 million Americans.

TeleRare Health aims to be the premier provider of virtual care for rare and genomic disease nationwide, envisioning a world where all patients have access to cutting edge diagnostics, treatments, and specialists.

"Significant breakthroughs have occurred in the management of rare disease," said Alex Katz, MD, medical geneticist and Chief Medical Officer of TeleRare Health.  "Yet approved treatments are available for a tiny fraction of these diseases, and access to care remains a problem for too many patients.  We'll work closely with rare disease patients to benefit from the available medications, and help all other patients to enroll, as possible, in the best option among the rapidly growing set of clinical trials.  For all patients, we'll offer symptom management through convenient video visits, with a methodical focus on detecting potential escalation and avoiding it."

TeleRare Health helps patients get the genetic testing they need, and ultimately aspires to ensure patients benefit from the AI revolution in genomics through constant surveillance of new, clinically actionable variant information. 

"Rare disease patients must go on a frustrating and convoluted diagnostic odyssey, often involving long wait times for appointments and extended journeys for in-person care," said Stacy Pike-Langenfeld, founder of KrabbeConnect.  "There are numerous virtual clinics in America for heart, kidney, and musculoskeletal care, to name just three entities.  We're overdue for a virtual clinic for the millions of Americans with rare disease conditions, and TeleRare Health's launch is cause for optimism."  The KrabbeConnect foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.

New research published September 14, 2023 by the EveryLife Foundation for Rare Diseases indicates that early rare disease diagnosis could save as much as $500,000 per patient. The report, "The Cost of Delayed Diagnosis in Rare Disease," delineates the avoidable costs associated with adrenoleukodystrophy (ALD), Duchenne muscular dystrophy (DMD), fragile X syndrome (FXS), generalized myasthenia gravis (gMG), Pompe disease (PD), severe combined immunodeficiency disorder (SCID), and Wilson disease.

TeleRare Health won the Early-Stage Innovation award at the December 7, 2023, third annual Bear Institute PACK (Pediatric Accelerator Challenge for Kids), a competition fostering pediatric digital health innovation. The Bear Institute is a pediatric technology partnership between Children's National Hospital and Oracle Health that is dedicated to using health information technology to improve the quality and safety of care for children.

About TeleRare Health
TeleRare Health is a National Virtual Clinic revolutionizing the delivery of rare disease care.  Our major objectives are to radically lower the Time to Diagnosis (TTD) and Time to Treatment Initiation (TTI) for rare disease patients, and manage rare disease patients longitudinally in a way that is profoundly convenient, leveraging the power of telehealth. Learn more at www.telerarehealth.com.

Press Contact:  Austin Letcher, TeleRare Health ([email protected], phone 651-994-0510).

SOURCE TeleRare Health

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