Anyone can tell you that navigating insurance is no easy task. Whether you have no medical needs or have an abundant, learning definitions, healthcare plans and the appeal process call for a basic guide. Find your go to guide on our webinar where you will get to hear from experts in insurance and learn how to read an insurance plan, navigate the insurance system, and get the benefits you need in order to manage your rare disease.
If you are unable to attend the live webinar, still register so you can receive a link to the recorded content.
Don’t forget, to access this webinar use the password: “Rare” with a capital “R”
Dave Caponera, Vice President, Patient Engagement and Access Support, Catalyst Pharmaceuticals
David Caponera, Vice President, Patient Engagement & Access Support at Catalyst Pharmaceuticals, an emerging biopharmaceutical company, preparing for the commercialization of an oral orphan product for Lambert Eaton Myasthenic Syndrome (LEMS) including working with patient organizations. Dave’s focus has been in the rare disease space and his experience includes working closely with patient advocacy organizations, developing patient services to support patients, physicians, and payers in the US, and in the distribution of Specialty Pharmacy products both in planning and implementing programs for orphan products. Dave has worked for Genzyme, Aegerion Pharmaceuticals, Pfizer, Amicus Therapeutics as well as various insurance companies.
Gina Szajnuk, Co-Founder and Executive Director, Rare and Undiagnosed Network (RUN)
Gina Szajnuk (Zanik) was born and raised in Madison, Wisconsin. She serves as the Co-founder and Executive Director for the Rare and Undiagnosed Network (RUN), a 501©3 nonprofit organization. Her three children, each of whom live with a rare and undiagnosed disease, continue to inspire and motivate her to empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support. Gina is also undiagnosed and is now the Undiagnosed Advocacy Ambassador for the National Organization for Rare Disorders (NORD), previously she was their Utah State Ambassador. Gina continuously fights for the rare community with her role as Chair of Utah Rare and making Utah the #1 state for Rare Disease Day in 2016. She offered a free symposium through the University of Utah and organized the Utah Rare State House event. Gina works around the clock to build a network of rare advocates, geneticists, researchers, specialists, and volunteers who can come together under one platform. She is currently launching as the Co-founder for both the Undiagnosed Alliance through a partnership with NORD as well as a new platform, RUNmyDNA.com. She is married to Justin Zanik, the NBA Milwaukee Bucks Assistant General Manager, previously with the NBA Utah Jazz. Through her husband’s position in the NBA, Gina has brought awareness to the NBA about the importance of Rare Disease Day. In 2016, seven NBA teams honored the rare community. Gina won the Rare Voice Award from the EveryLife Foundation for Rare Diseases as their number one State Advocacy Ambassador, she also recently accepted the Rare Champion of Hope – Advocacy Award from Global Genes. She served on the Mountain States Genetics Regional Collaborative while living in Utah and she continues to serve on the Program Committee for the National Ability Center. She graduated with a Bachelor of Arts from the University of Wisconsin – Madison.
Danny_LevineDaniel Levine, Founder & Principal, Levine Media Group
Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications.