Mary Morlino

About Mary Morlino

My mission is to empower the patient community through support and education so they are equipped and inspired to participate in effective advocacy for themselves, their communities and the rare disease world as a whole. Through my own personal and professional experience, I understand the challenges patients face during the rare disease journey. As a rare disease patient, living with Sarcoidosis, as well as an advocate and nonprofit professional, I bring over 16 years of experience providing support and education throughout the continuum of living with a chronic condition. Working collaboratively with patients, patient advocacy organizations, I have engaged with researchers, medical professionals, legislative representatives and other changemakers to identify and develop initiatives to enact improvement for the patient lived experience. I am a connector, communicator and educator. What drives me is translating my knowledge of the rare disease landscape to understandable and actionable opportunities for individuals and organizations. I thrive when working with similarly passionate people from varied backgrounds and expertise toward empowering, educating and ultimately improving the lives of rare disease patients. I strongly believe the patient’s voice is vital to progress for not only the rare disease community, but for medical research and positive change that creates. My unique life experiences have taught me the importance of balancing compassion, empathy and understanding with the need to identify, analyze and quantify data to have a comprehensive understanding of how to best move forward to ensure that patients\' needs are prioritized.

Experience

1. Patient Navigator

   Undiagnosed Diseases Network Foundation Udnf

   Jan 2024 — Present

   The UDNF aims to foster collaboration among patients, clinicians, and scientists to enhance the quality of life of undiagnosed and ultra-rare disease patients. We do this by mitigating barriers to equity and access in healthcare; setting standards for patient management; and bridging diagnosis and therapeutics as well as research and clinical care in undiagnosed patients and patients with ultra-rare diseases.

Education

• NODA - National Operatic & Dramatic Association

  Theatre/Theater

• University of Massachusetts Boston

  Bachelor of Science - BS, Kinesiology and Exercise Science

  1986 — 1990