Melissa Hogan

Melissa Hogan is the Founder and Immediate Past President of Project Alive, a Hunter syndrome research and advocacy foundation. After her youngest son was diagnosed with the rare disease Hunter syndrome (Mucopolysaccharidosis II) in 2009, she left her career as a corporate lawyer and strategy consultant to focus on advancing awareness, education, and research in the Hunter syndrome community. Under her leadership, Project Alive initiated and funded a gene therapy research program that received IND approval and progressed toward enrollment. Ms. Hogan is considered a leading expert on clinical trials for neurodegenerative diseases and has consulted on the design of clinical trials for Hunter syndrome around the world. She speaks on topics such as advocacy, clinical trials, and social media in rare disease, and her blog has been read in dozens of countries. In addition to her current role in leading the patient registry and outcomes initiatives at Project Alive, she serves as an FDA Patient Representative, and is on the advisory boards of the Mayo Clinic Social Media Network, as well as the Foundation Alliance and Corporate Alliance committees of Global Genes.