About Anne


Hey there. Just a quick intro to me. When my son was diagnosed with an ultra-rare disease 5 1/2 years ago, our lives were completely flipped upside down. I found myself struggling to understand the disease, maintain normalcy in our family, care for 3 kids and fight this disease. I’ve spent the last 5 years involved in rare disease: leading a non-profit, serving on multiple advisory boards, speaking across the country to clinicians, patients, caregivers, advocates and biotech executives. I’ve been involved in multiple projects within rare disease and at the end of the day everything comes back around to the most important aspect – understanding the reality of rare disease. My hope is to use this platform to showcase the many incredible voices of rare disease out there to talk about the things that don’t always get said in public, but the things that are chatted about once the mic is turned off. Thanks for coming along on this ride with me- nothing but good times ahead.