Search results for ‘Ava’
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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...
Rare Disease Day Gathering
Contact information: Gina Zanik (Szajnuk)Co-founder and Executive Director, Rare and Undiagnosed Network (RUN) Vice Chair, Utah Rare Disease Advisory Council (RDAC) E: ginaszajnuk@gmail.comC: (310) 883-4353To Read: A mother’s unrelenting crusade to...
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...
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....
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...
PRESS RELEASE: Undiagnosed Patient Organizations Begin Leveraging RARE-X
Rare and Undiagnosed Network and Undiagnosed Diseases Network Foundation join forces with RARE-X to enable patient data collection for undiagnosed patients and families Rare and Undiagnosed Network and...
Today is Undiagnosed Day! #UndiagnosedDay
How can you participate? Please help us raise awareness for the undiagnosed disease community by sharing about Undiagnosed Rare Disease Day (UndiagnosedDay) on April 29th! Please use #UndiagnosedDay...
Searching for a Diagnosis by Daniel Levine
April 21, 2022 Many people living with a rare and undiagnosed disease face a prolonged diagnostic odyssey that can be financially and emotionally taxing as they seek to...