New Data-sharing Program Aims to Speed Innovation in Rare Diseases
A new U.S. initiative called Rare Disease Cures Accelerator–Data and Analytics Platform — dubbed RDCA–DAP — aims to accelerate…
Articles by Bionews Staff
New Institute Aims to Leave No Rare Disease Patient Behind
A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare…
Group Focuses on Rare Disease Clinical Trial Participation
Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a…
31 Days of SMA: I Almost Couldn’t Help Becoming an Advocate
Photo courtesy of Ben Mattlin Day 31 of 31 This is Ben Mattlin’s (@benmattlin) story: The disability rights…
‘Running for Rare’: NORD a Charity Partner of 2021 NYC Marathon
The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS…
31 Days of SMA: Celebrating Our Differences Should Be the Norm
Photo courtesy of Melissa Milinovich Day 30 of 31 This is Claudia Milinovich’s story: My mom is a normal…
31 Days of SMA: Our First Cure SMA Conference Got Us Smiling Again
Photo courtesy of Keith Schaper Day 29 of 31 This is Keith Schaper’s story: Our son, Oliver, was officially…
31 Days of SMA: Learning to Advocate for Myself as a Teen with SMA
Photo courtesy of Autumn Day 28 of 31 This is Autumn’s (@itsss.autumn.here) story: Hi! I’m Autumn. I was…
31 Days of SMA: Changes I Had to Make After My Son’s Diagnosis
Photo courtesy of Rachel O’Hagan Day 27 of 31 This is Rachel O’Hagan’s (@bravelikebeau) story: I am a…
31 Days of SMA: Let’s Work Together to Change Expectations
Photo courtesy of Carissa Decelles Day 26 of 31 This is Carissa Decelles’ (@rheelgirl) story: Hello! My name…