Feb 28th Rare Disease Day: Zebras and Equity

Rare diseases as a health equity group. Rare doesn’t mean never. Commonalities & differences.Learning from tiny populations. Chat with Doug Lindsay.

Proem

For twenty-five years, physicians diagnosed my periodic episodes of fainting, falling, disorientation as cardiac. Eventually, in my 50s, I learned I had multiple Sclerosis, not cardiac disease — repeated misdiagnosis. Multiple Sclerosis is not a rare disease. I come only this close to appreciating the trials and tribulations of experiencing an undiagnosed illness. Something is wrong, I know it, I feel it, why can’t you name it and treat it? February 28th is Rare Disease Day. Twenty to thirty million people have rare diseases and struggle to name their constellation of conditions and find treatment. I reached out to my colleague, Doug Lindsay, who I met through PCORI (Patient-Centered Outcomes Research Institute)’s Rare Disease Advisory Panel. Let’s jump right into our conversation.

The fragility of health for Doug Lindsay

Health Hats: Doug, thank you so much for joining us. I’m excited that you’re here. I don’t think I only met you not that long ago. And we were on a call together. I believe the PCORI Rare Disease Advisory Panel. You pushed all sorts of buttons for me. Good buttons. And I reached out and hence…