Living with a rare disease is difficult. Getting access to treatment for rare diseases can be inaccessible for many. Many rare disease medications are expensive and subject to price gouging...

It was 2018, and I turned 50 years old in March. The following month, we lost our oldest son to a brain tumor. He was only 22 years old. It...

Living with a rare disease is difficult. Getting access to treatment for rare diseases can be inaccessible for many. Many rare disease medications are expensive and subject to price gouging...

It was 2018, and I turned 50 years old in March. The following month, we lost our oldest son to a brain tumor. He was only 22 years old. It...