Recent Posts
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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...
Thank you all for your continued support of our journey!
Family Love Laughter Hugs Smiles Kisses Togetherness Blessed Hope Appreciation Perseverance Advocacy Continue the fight Calm and Strong Always Pray…Safe & Healthy Still have two feet on this...
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...
#UndiagnosedDay is coming up on April 29th!
Please help us raise awareness for the undiagnosed rare disease community by supporting Undiagnosed Rare Disease Day on April 29th! #UndiagnosedDay What is an undiagnosed condition? A child...
A mother’s unrelenting crusade to help those trapped in the wilderness of the undiagnosed
Gina Szajnuk’s kids suffer from undiagnosed disease; so does she. She is determined to find answers, and help By Lee Benson March 5, 2022 5:42 p.m. MST A mother’s unrelenting...
Today is Rare Disease Day
Today is for raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers. In the USA, it’s considered...