Community Leaders Unite to Provide Support and Resources for Thousands of Utahns with Rare Diseases
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 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
“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
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,
One company in this collaborative ecosystem is Recursion, a
“Recursion was founded to reinvent the drug development and discovery process with an early focus on rare diseases,” said
For additional information visit Rare Disease Day in
Ryan Kelly Recursion Pharmaceuticals610-442-1896 email@example.com Gina Zanik Rare and Undiagnosed Network (RUN) (310) 883-4353 firstname.lastname@example.org Tom HumeGlobal Genes email@example.com