Dr. Carl Barnes is a physician from Denver, CO, who has engaged in research on rare forms of genetic heart disease and volunteers with the patient advocacy organization, SADS Foundation (Sudden Arrhythmia Death Syndromes). Carl has also cared for a wide variety of patients with rare diseases, proving that in primary care, “rare is common.”
As a clinical educator in Interprofessional Collaborative Practice, Dr. Barnes promotes collaboration with advocacy organizations on shared goals, such as step therapy reform, telehealth expansion, and prescription drug cost reduction. Nowhere is collaboration more evident than at RDLA, where patients, care givers, researchers, and healthcare employees advocate as one.
Carl has benefited immensely from participating in Rare Disease Week, Rare Across America, and Rare Advocacy Learning programs. Lastly, being a Rare Artist judge has allowed him to utilize his graduate training in Narrative Medicine to help others share the “narrative of rare” through storytelling.
