Denise Robinson

Denise was introduced to the EHE community in 2017 after a friend’s short battle with the aggressive form of EHE. She immediately became a volunteer for the Foundation, served on several working committees, and joined the Board of Directors in 2020. From 2021 to 2024, Denise served as Director of Research and, in 2024, was named Executive Director.

She has over 20 years of clinical research experience, including Phase I-IV clinical trials in many diseases, including rare cancer and non-cancerous life-threatening diseases. Although her early career began in life sciences, she has spent most of her professional life working with patients, clinicians, and drug developers to ultimately bring life-changing treatments to people.

As Executive Director, Denise oversees all aspects of the Foundation’s work. She is passionate about spending time with people affected by EHE, and she thrives on championing better care and more research about the disease.