Rare Disease Day (February 28, 2023)
February 28 is Rare Disease Day. Prior to Scott being diagnosed, I never thought about rare diseases. I thought of cancer patients and families as "those brave people fighting cancer." I never thought I would become one of them, never wanted to become one. 25% of all cancers are rare, as are all pediatric cancers. According to the NIH, nearly 10% of the population have a rare disease ( https://ncats.nih.gov/news/events/rdd ). Of the estimated 10,000 rare diseases, fewer than 5% have an FDA-approved treatment. Last week a colleague reached out after her father was diagnosed with a metastatic rare cancer. She needed help navigating a bewildering medical system while processing the shock of the diagnosis. Below are some medical lessons I learned when dealing with a rare cancer: - ***Get a specialist for a rare cancer if at all possible.*** This really is so critical. It may not be at your local hospital, but you can consult with other hospitals on treatment opti...