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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 Day Event Video at Recursion Worldwide Headquarters
Press Release Community Leaders Unite to Provide Support and Resources for Thousands of Utahns with Rare Diseases Declaration Governor Spencer J. Cox’s Rare Disease Day Declaration for February...
Chronic. Invisible. Undiagnosed. Migraine.
Chronic. Invisible. Undiagnosed. Once again, we thought we were going to lose Ava. We spent this past Monday in the ER as well as on January 20th. Her...
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....