Rare Disease Day Panel Opens Window to Patient Experience
Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive…
Articles by Hawken Miller
Surge in Telehealth Brings Access, Convenience to Rare Disease Patients
A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt…
Q&A With RARE-X Disease Data Platform Founder, Nicole Boice
The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help…
More Studies Confirm Hefty Economic Burden of Rare Diseases
It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.
Rare Disease Day Events Bring Awareness, Equity to Patients
Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends,…
Artist With SMA Pens Song ‘SPACES’ About Looking Beyond Disability
A song written and performed by an artist with spinal muscular atrophy (SMA) is the latest project to come…
Real Life Inspires Son With SMA on ‘Ordinary Joe’ TV Show
One of NBC’s newest TV shows, “Ordinary Joe,” is making a mark in the spinal muscular atrophy (SMA)…
All Wheels Up Brings Wheelchair-accessible Planes One Step Closer
Flying can be an ordeal for many people with disabilities who rely on wheelchairs to get from point A to…
SMA Doesn’t Stop Teen From Pursuing Academic Dreams at MIT
Ben Lou battles the weakness in his body that comes with having spinal muscular atrophy (SMA) type 2, but his…
New Quality of Life Survey Aims to Help Inform SMA Community Needs
Bionews Insights is launching a new survey, in collaboration with SMA News Today, with the goal of understanding how different…