Community Leaders Unite to Provide Support and Resources for Thousands of Utahns with Rare Diseases
21 Febrero 2023 - 10:00AM
Rare Disease advocacy organizations and biotech and healthcare
industry leaders will partner to accelerate the diagnosis and
improve the care of more than 344,000 Utahns living with a rare
disease. On Rare Disease Day, Feb. 28, 2023, community leaders will
host a free event from 5 to 7 p.m. at Recursion Headquarters, 41
South Rio Grande Street in Salt Lake City to provide support and
resources for those living or impacted by a rare disease.
Additionally, Gov. Spencer J. Cox will declare February 28, 2023
Rare Disease Day in the State of Utah.
Rare disease is considered a condition with less than 200,000
patients. More than 10,000 rare diseases are known, most of which
are genetic in nature. An estimated one in ten people in the United
States have a rare disease. Today, 95 percent of rare diseases have
no treatment.
The Utah Rare Disease Day event will raise awareness for rare
and undiagnosed diseases and the lifelong impact they have on
patients and their families – while highlighting progress in
diagnosis and treatment discovery. Organizers will recognize
advocates who have been instrumental in building Utah’s rare
disease community and have dedicated themselves to support this
important work.
“The Beehive State is buzzing with activity to address the needs
of patients with rare diseases. From the use of artificial
intelligence to cutting-edge genomics, the state is fertile ground
for innovation to drive needed advances,” said Charlene Son Rigby,
CEO of Global Genes. “By joining with patient organizations, drug
developers, and researchers in Utah to mark Rare Disease Day, we
hope to raise awareness about these conditions and the
collaborative efforts essential to improving the lives of rare
disease patients and their families.”
“There is an urgency for diagnoses, treatment and cures for the
rare disease community,” said Gina Zanik, co-founder and executive
director of Rare and Undiagnosed Network and Vice Chair of the Utah
Rare Disease Advisory Council. “The diagnostic odyssey for someone
with a rare disease takes on average seven years. We must shorten
the length of the diagnostic journey and come together to support
patients and their families throughout the duration.”
Rare Disease Day is an annual observance on the last day of
February. A series of events will be held globally to raise
awareness, strengthen the rare disease community, and advocate for
needed changes to improve the lives of the 400 million people
around the world who suffer from these conditions.
Rare disease patients will come together with the RARE and
Undiagnosed Network (RUN), Aware of Angels, Global Genes, RARE-X,
BioHive, Recursion, Metrodora Institute, ARUP, BioUtah, the
University of Utah and the Rare Disease Advisory Council (RDAC) for
the Rare Disease Day gathering. The coalition of organizations
represents Utah’s strong collaborative ecosystem dedicated to
coordinating, advocating, and promoting the interest of those
living with rare diseases.
One company in this collaborative ecosystem is Recursion, a Salt
Lake based biotech which is reimagining drug discovery and
development through the integration of advances in biology,
chemistry, automation, data science, and engineering.
“Recursion was founded to reinvent the drug development and
discovery process with an early focus on rare diseases,” said Chris
Gibson, Co-Founder and CEO of Recursion. “The status quo is failing
to meet the needs of millions of patients with rare diseases and we
are harnessing technologies like artificial intelligence to
accelerate the process of bringing new therapies to patients who
need them.”
For additional information visit Rare Disease Day in Utah.
Ryan Kelly
Recursion Pharmaceuticals
610-442-1896
ryan.kelly@recursionpharma.com
Gina Zanik
Rare and Undiagnosed Network (RUN)
(310) 883-4353
ginaszajnuk@gmail.com
Tom Hume
Global Genes
tom.hume@globalgenes.org
Recursion Pharmaceuticals (NASDAQ:RXRX)
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