When Insurers “Just Say ‘No’” to New Drugs
What if your insurance company refused to cover your medication just because it was new?
COVID-19 Anxiety Burdens Rare Disease Community
Most Americans have experienced some level of anxiety about the COVID-19 pandemic. Recent survey results show that anxiety is magnified for people living with a rare disease.
New Paper Highlights Amyloidosis Patients’ Struggle for Access
It’s rare for a rare disease to have an FDA-approved treatment. Yet transthyretin amyloidosis, a complex disease caused by improper protein build-up, has three.
Diagnosis and Treatment Challenges Strain Amyloidosis Patients
All patients have a story about how they began experiencing symptoms, saw their doctor and came to a diagnosis.
When Rare Disease is a Family Affair
Watching a family member succumb to a rare and progressive disease is painful. But when that rare disease is genetic, empathy can become anxiety.
Rare Disease Day Spurs Awareness
As Rare Disease Day nears, patients, their families and the organizations that represent them are fighting for greater awareness of the conditions they face.
Exchange Plans Disrupt Rx Access for Rare Disease Patients, New Study Reveals
New research suggests that rare disease patients purchasing health coverage through a state or federal exchange face an all-too-common challenge: access to so-called orphan drugs.
Rare Disorders Organization Stresses Testing, Transparency on Biosimilars
Maximizing biologic medicine’s potential for rare disease patients means observing needed safety precautions.
Limited Networks May Limit Options for Rare Disease Patients
Limiting health care provider networks may save money for insurers grappling with the Affordable Care Act.
Specialty Tiers Complicate Rare Disease Treatment
Patients with rare diseases still struggle to access the medicine they need, despite growing disease awareness and passage of the Affordable Care Act.
