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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...
Today is Undiagnosed Rare Disease Day #UndiagnosedDay
All diseases were once undiagnosed. What is an undiagnosed condition? A child has an “undiagnosed condition” when a physician is unable to find a diagnosis for certain characteristics...
Ava’s Shuntversary
Today is Ava’s Shuntversary, also known as the day that Ava received the shunt that has kept her alive for seven years. She was born on June 4th,...
Today is Undiagnosed Rare Disease Day #UndiagnosedDay
Join us to honor the Undiagnosed Rare Disease Community today as well as the frontline heroes of COVID-19 All diseases were once undiagnosed. During these very uncertain times,...
Ava Szajnuk’s Sixth-Year Anniversary: Second Chance at Life
June 15th marks Ava’s sixth-year anniversary of her first cranial surgery during the summer of 2013. Today, also marks the first day I started to share our journey...