‘Never Say Invisible’ Keeps Man’s Fight With ALS, Wider World Going
Shortly after Jeremy Schreiber, then 39, was diagnosed with amyotrophic lateral sclerosis (ALS), he had another life-altering decision to…
Articles by Hawken Miller
Telehealth Added to Latest Digital-friendly NORD State Report Card
The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally…
RaDaR Serves as Starting Point for Creating Rare Disease Registry
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by…
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…
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,…
With Likely Diagnosis, Target ALS Founder Refocuses
Note: This story was updated Jan. 25, 2022, to clarify that Target ALS has raised $90 million since its inception…
Young Woman With ALS Creates Nonprofit for People Like Her
When Leah Stavenhagen was 27, she was living in Paris and traveling through Europe. But an amyotrophic lateral sclerosis…