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Project UnDiagnosed! Recruiting Parents of Undiagnosed Child or Children for an Anonymous Online Survey
Are you a parent of a child with an undiagnosed medical condition? Clinical psychologist PhD student, Meena, is looking to learn more about the needs and challenges of...
Utah Rare Disease Day Gathering Agenda
Contact information: Gina Zanik(Szajnuk)Co-founder and Executive Director, Rare and Undiagnosed Network (RUN) Vice Chair, Utah Rare Disease Day Council (RDAC) E: ginaszajnuk@gmail.comC: (310) 883-4353To Read: A mother’s unrelenting crusade to help...
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...
Utah Rare Disease Day on Tuesday, February 28th
Community leaders unite to provide support and resources for thousands of Utahns with Rare Diseases Registration for the event is now closed. We will have a virtual link...
Governor Spencer J. Cox’s Declaration of Utah Rare Disease Day on February 28th, 2023
Rare-Disease-Day-Declaration-2023.pdf (bioutah.org) Contact information: Gina Szajnuk (Zanik)Co-founder and Executive DirectorRare and Undiagnosed Network (RUN) E: ginaszajnuk@gmail.comC: (310) 883-4353To Read: A mother’s unrelenting crusade to help those trapped in the wilderness of...
Global Genes Patient Advocacy Summit 2022: Undiagnosed? Misdiagnosed? Issues Related to Obtaining a Genetic Diagnosis
Undiagnosed? Misdiagnosed? Issues Related to Obtaining a Genetic Diagnosis was a session at the 2022 RARE Patient Advocacy Summit, which took place September 12-14 in San Diego, California....
RDAC Presentation to the UTAH LIFE SCIENCES INNOVATION CAUCUS
Gina Zanik (Szajnuk), Vice Chair, presented on behalf of the Rare Disease Advisory Council (RDAC) to the Utah Life Sciences Innovation Caucus on January 17th, 2023. Watch: RDAC...
Asia Skye Atwater
Hi. my name is Alicia Atwater and I’m fundraising for my niece Asia Atwater’s funeral expenses. Fundraiser for Season Atwater by Alicia Simons Atwater : Asia Skye Atwater...
RUN’s Data Collection Program Community Webinar
PATIENT-OWNED DATA TO ACCELERATE DIAGNOSIS, TREATMENTS & CURES FOR UNDIAGNOSED DISEASE See how sharing patient information will collectively make a difference in finding a diagnosis for undiagnosed disease...