April 26, 2021
Watching a patient eat. Asking about family photos on the nearby coffee table. Observing the living space. These are all benefits of telemedicine that help doctors see their patients through a new lens.
March 30, 2021
Rare diseases don’t just make life difficult. They also create a financial burden for patients, families, communities and the health care system.
February 26, 2021
For Valerie, it began with shortness of breath and trouble sleeping. Eric found he could no longer stand in the shower. And Janet discovered she could barely hold a pen to sign her name.
February 8, 2021
I was 15 when I was diagnosed with two rare liver diseases. Growing up in rural Kentucky, that meant countless out of state trips to see specialists. Those trips were a family commitment.
November 11, 2020
Accessing proper health care can be a tough fight for America’s veterans. Those living with a rare disease called amyloidosis provide a telling example.
August 28, 2020
What if your insurance company refused to cover your medication just because it was new?
August 19, 2020
A potential treatment breakthrough offers hopeful news to parents of infants with a rare blood disorder.
August 7, 2020
Cardiologist Dinesh Kalra, MD, discusses COVID-19 and rare disease in this interview with the Alliance for Patient Access. Read Interview
July 7, 2020
Amyloidosis is a rare disease caused by a buildup of abnormal proteins in the body’s organs and tissue. Diagnosing amyloidosis…
May 27, 2020
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.