Health insurance coverage has undergone significant changes in recent years. At the forefront are changes in how the insurance industry designs and delivers benefits and new coverage options created by the Affordable Care Act.

This upcoming webinar will not only provide further discussion on questions and concerns following Navigating Health Insurance Issues Part 1, but will also provide an in-depth focus for the rare disease community — from the rare disease community! Panelists will detail points to consider when attempting to overcome obstacles to accessing your provider or treatment in health insurance plans, restrictions they have faced and overcome, ways to navigate the appeals process, and what to do when your provider network shrinks.

Find out how you can better evaluate which option is best suited for you by viewing the recording.


Julie Raskin, Congenital Hyperinsulinism International
Since 2010, Julie Raskin has been the Executive Director of Congenital Hyperinsulinism International (CHI), an organization dedicated to improving the lives of patients with the rare condition, congenital hyperinsulinism (HI). Julie works very closely with patient families, leading researchers and clinicians, and industry partners to help patient families receive the services and supports they need. Julie also works closely with the larger rare disease community to further important common goals in the area of public policy, patient support, and rare disease drug development.

Stephanie Bozarth, National MPS Society
Stephanie Bozarth is the parent of a child diagnosed with a rare, degenerative disease called Morquio A (aka MPS IVA). Ever since her daughter’s diagnosis, Stephanie has raised awareness, fundraised for innovative research, networked with other rare disease parents and groups, and advocated passionately for a cure or treatment that will slow the progression of her child’s disease. Stephanie serves as Vice President of the National MPS Society that serves over 700 families nationwide living with MPS and related diseases. She is also the Chair for the Committee on Federal Legislation.

Pam King, Global Patient Strategies
Pam King spent much of her career as a BioPharma executive. In 2006, she turned her focus to rare diseases and has since formed her consulting firm, Global Patient Strategies. She often works closely with advocacy groups to help patients navigate through the obstacles they face accessing treatment. Pam has earned respect for her strategic approach of instilling transparent and collaborative partnerships between advocates, patients, researchers, industry and policy makers.


Jennifer Bernstein, Horizon Government Affairs
Jennifer joined Horizon Govenment Affairs as Vice President, focusing on legislative and regulatory developments within the pharmaceutical, biotechnology and medical device sectors. Prior to joining Horizon, Jennifer was Vice President of Healthcare Research at a healthcare advisory and financial services firm and was responsible for anticipating and translating legislative and regulatory catalysts within all sectors of the healthcare marketplace.