Dorota Zgodka, PhD, DSc
Dorota Zgodka is a pharmaceutical and healthcare executive, currently Principal at human-centric research and service solutions design strategic consulting company. She brings a three-sided perspective and over 20 years of experience from pharma industry, umbrella patient advocacy and HTA organizations, throughout the medicine value chain and care pathway, in senior leadership roles spanning: strategy, commercial, […]
Shailesh Chavan, MD
Dr Chavan is a physician, scientist and entrepreneur with 20+ years in multiple therapeutic areas including rare disease in Immunology, Oncology, Transplantation among others. He currently is the Chief Medical Officer at HepQuant. He has recently completed a Venture Capital fellowship with focus on supporting founders in healthcare start-ups. He enjoys mentoring and coaching individuals […]
Kavita Nair, PhD, FAAN
As a health outcomes researcher, my academic interests have focused on leading real-world outcomes research initiatives in the Department of Adult Neurology at the University of Colorado Anschutz Medical Campus. Notably in examining the comparative effectiveness of drug treatments in the management of neurological diseases specifically multiple sclerosis and more recently in the rare neurological […]
Joff Masukawa
Joff Masukawa is founder of Diligentia Strategy, a life-sciences consultancy specializing in development of commercial strategies and tactical plans for manufacturers of rare orphan and specialty drugs, cell and gene therapies, digital therapeutics and other emerging medical innovations. Diligentia also offers government relations and public affairs services to facilitate client business priorities with policymakers and […]
Vanessa Ferreira, PhD, MBA
With over 13 years of extensive experience, I am deeply committed to pioneering and executing comprehensive patient engagement and advocacy strategies within various health sectors. Renowned for my ability to build and nurture meaningful relationships with patient advocacy groups, I excel at weaving patient perspectives into all phases of research, drug development, and strategy formulation. […]
Swapna Kakani, MPH
Swapna Kakani, MPH is an award-winning, advocate, speaker, consultant, and researcher in rare and chronic disease health care delivery and patient experience. Swapna was born with Short Bowel Syndrome (SBS) due to atresia and has lived with TPN, tube feeding, and an ostomy for decades. She received a small intestine transplant 10 years ago. Through […]
Paris Scott, JD
Paris Scott is a dynamic fundraising and program management professional with a diverse background in law, social justice, health equity, and education advocacy. She excels at driving strategic initiatives, securing major gifts, and developing impactful fundraising programs that benefit vulnerable communities. As the Director of Development at the We Mean Business Coalition, Paris leads efforts […]
Mousumi Bose, PhD
Dr. Mousumi Bose is the mother of Ilan Betzer (2010-2011), who was born with Zellweger spectrum disorder, a rare genetic disorder of peroxisome biogenesis. As a result of her personal experience with her son, Dr. Bose re-focused her career goals to study rare disease. Over the last several years, Dr. Bose has conducted research and […]
Marc Yale
Marc Yale was diagnosed in 2007 with Cicatricial Pemphigoid, a rare autoimmune blistering skin disease and this inspired him to help others with rare diseases. He has been volunteering and working with the International Pemphigus and Pemphigoid Foundation for 17 years with people to improve their quality of life and encouraging them to become self-advocates. […]
Kathryn Cowie
As COO of Nested Knowledge, Kathryn supports the development of software for living evidence reviews. Previously, Kathryn conducted health economics and outcomes research at Biohaven Pharmaceuticals as well as clinical addiction research at the National Institutes of Health. Through the Young Adult Rare Representative (YARR), Kathryn advocates for rare disease policy change and speaks about […]