RARE Daily

TeleRare Health Launches National Virtual Clinic for People with Rare Diseases

April 30, 2024

Rare Daily Staff

TeleRare Health launched its service to provide virtual care for people and their families with rare and genomic diseases nationwide.

“Significant breakthroughs have occurred in the management of rare disease, yet approved treatments are available for a tiny fraction of these diseases, and access to care remains a problem for too many patients,” said Alex Katz, medical geneticist and chief medical officer of TeleRare Health. “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 seeks to ensure patients benefit from the AI revolution in genomics through constant surveillance of new, clinically actionable variant information.

TeleRare Health works to reduce the time to a diagnosis and time to treatment initiation. It also provides care coordination and referrals, information on available treatments and clinical trials, and information on patient advocacy organizations. It does not currently accept insurance.

Initial new patient consultations are $400 and visits after that are $250 each. It also offers an annual subscription that allows for unlimited visits for $4,000 a year. Visits are conducted via video.

“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.”

Photo: Alex Katz, medical geneticist and chief medical officer of TeleRare Health

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