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.
TeleRare Health™ Announces Launch of
National Virtual Clinic for Rare Disease Patients
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 (austin@telerarehealth.com, phone
651-994-0510).
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SOURCE TeleRare Health