Archive for the ‘Undiagnosed Rare Disease’ Category
Page 2 of 2
April 29th is #UndiagnosedDay: Undiagnosed Rare Disease Day!
All rare diseases were once undiagnosed. Please help us raise awareness for #UndiagnosedDay. Thank you to Governor Gary Herbert for his declaration. This coming April 29th is officially...
#UndiagnosedDay Celebrates Undiagnosed Diseases Network (UDN)
“Solving Medical Mysteries Through Team Science” – UDN Zarko’s Story: Genomic Medicine In Action “Zarko Stanacev experienced years of mysterious debilitating symptoms. He applied to NIH’s Undiagnosed Diseases...
Mediaplanet: “Undiagnosed” Persists as an Ominous Diagnosis for Rare Disease Patients
RUN recently participated in Mediaplanet’s Rare Diseases campaign where we united with likeminded industry leaders to educate Americans on the urgent need to gain public, private and federal...
Szajnuk Update: Ava Szajnuk and our Undiagnosed Rare Disease
Ava Szajnuk’s CT on November 16, 2017: Technology is beautiful. Ava recently fell and hit her head in gym class. She suffered a head injury and a...
The Undiagnosed Alliance: Mission and Goals
The Undiagnosed Alliance (the Alliance) is a coalition of undiagnosed rare disease stakeholders coming together with the purpose to foster unified advocacy among patient organizations, individuals, and stakeholders...