Erin Ward is Co-Founder/President of MTM-CNM Family Connection, a non-profit for Myotubular & Centronuclear Myopathy. Erin has directed national conferences and led a Patient Listening Session and a Patient-Focused Drug Development Meeting with the FDA for this rare disease community. Recently, Erin co-led the creation of the international MTM-CNM Liver Collaborative Working Group. Holding a master’s degree in education and a certificate of advanced study in counseling, Erin combines her professional skills with her personal experiences, as a mother to a son who lived with Myotubular Myopathy, to work towards improving care and patient-professional partnerships across both clinical and therapeutic drug development systems. Erin served as Associate Faculty for the Institute for Professionalism and Ethical Practice at Boston Children’s Hospital and Harvard Medical School for over 20 years, facilitating medical education programs to enhance patient-provider communication and shared decision making. She is a Patient Engagement Consultant for Boston Children’s Hospital’s complex spine, multidisciplinary trach, and complex care teams. Erin is an academic researcher, author, and presenter, most often on topics of patient engagement, complex care, and rare disease advocacy.