Posts tagged ‘Rare Disease’
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Watch the #UndiagnosedDay Presentation by Ava Zanik (Szajnuk), Undiagnosed Rare Advocate
“Imagine that you only get three years of good health and they are the three years you don’t really remember because you were too young.” – Ava Szajnuk...
Watch Gina Zanik (Szajnuk) on #UndiagnosedDay and the Challenges Faced by Patients | VibeCast Episode 9
What is Undiagnosed Day? Undiagnosed Day is to celebrate those living with an undiagnosed disease and their families as well as to remember the ones we have lost....
Utah Rare Disease Day Event Recap Video by Recursion
For the video of the entire event visit Utah Rare Disease Day Event Video at Recursion Worldwide Headquarters For additional information visit Rare Disease Day in Utah. Contact information: Gina...
Rare & Undiagnosed Network Provides Advocacy, Networking and Support for Patients and Families
Increasing support and awareness worldwide for rare and undiagnosed patients and families. AscellaHealth 03/23/2023 With the collective dedication of advocates, patients, families, researchers and healthcare providers, thousands of...
Utah Rare Disease Advocacy Council (RDAC) Policy Guide
UTAH RARE DISEASE ADVISORY COUNCIL February 16, 2023 Dear Senators and Representatives, In 2020, the Utah legislature established the Rare Disease Advisory Council (RDAC) (Utah Code Annotated Section...
Community Leaders Unite to Provide Support and Resources for Thousands of Utahns with Rare Diseases
February 21, 2023 11:00 ET | Source: Recursion Pharmaceuticals Salt Lake City, Utah, Feb. 21, 2023 (GLOBE NEWSWIRE) — Rare Disease advocacy organizations and biotech and healthcare industry leaders will...
Watch our #RUN2U Program: University of Utah School of Medicine’s Pediatric Medicine Interest Group
In 2018, RUN partnered with the University of Utah School of Medicine’s Pediatric Medicine Interest Group for an hour of experiencing what it is like to live with...
RUN’s Educational Series: RARE Evolution with Recursion
RUN is excited to share a video from our first RUN Educational Series with Recursion Pharmaceuticals. This event was designed to inspire, motivate, and spark collaboration among the rare...
#RUN2U Program: University of Utah School of Medicine’s Pediatric Medicine Interest Group
Do you know what it is like to live with a rare or an undiagnosed rare disease? In 2018, RUN partnered with the University of Utah School of...
RUN Educational Series: Speaking Opportunity
Have you participated in a clinical trial and are open to sharing your experience at a future RUN Educational Series event on clinical trials? If you are a...