Melissa Hogan is an advocate for rare disease diagnosis, treatment, research and patient support. She speaks, tweets, and writes to create a dialogue and bring together caregivers, providers, and the health care and pharma companies that serve them.
Her advocacy is continually inspired by her son Case, now four years old, who was diagnosed two years ago with Hunter Syndrome, and who currently sees 11 doctors and three therapists, receives a weekly four-hour infusion, and participates in a clinical trial. Based on these experiences and her "former" life as a lawyer and management consultant, Melissa now writes and speaks about the value of provider education in the diagnosis and treatment of rare disease. She is driven by the fact that her son was seen by a number of specialists and underwent several procedures before his grandmother eventually diagnosed him after seeing an episode of Mystery Diagnosis about Hunter Syndrome.
Melissa also seeks to compile and discuss the daily challenges of rare disease and works with families, organizations, providers, and pharmaceutical companies to find solutions to these challenges. She also seeks to encourage those facing chronic health care challenges by providing information, connection, and emotional support and speaks about how organizations can assist in these challenges.
