Each year we compile a comprehensive list of therapies approved by the Food and Drug Administration as well as all investigational therapeutic products undergoing clinical trial. We publish that list in a special issue of our quarterly magazine Dateline Federation.
Dateline Live! A Two-Night Webinar Event.
Monday, Nov 14: Insurance Bootcamp
Tuesday, Nov 15: Navigating Approved Products and Emerging Therapies
Register today and plan to spend your evening with us! Stay tuned for more details soon.
Adrian Palau-Tejeda is a successful Health Care Policy leader, driven by community engagement, data and stake-holder relationships.
Coming from a background focused on serving the underserved, Adrian has worked previously in the rare disease space to promote the equitable access to treatments and cures for underserved communities.
Since joining the team at the Hemophilia Federation of America, he has helped relaunch the Health Disparities Council and is excited to work to drive forward the cause of health equity in the bleeding disorder space.
Louise Norris is a health policy analyst for healthinsurance.org and medicareresources.org, and a nationally recognized expert on health insurance. Her work has appeared in numerous other publications, including Health Affairs and Verywell. She has co-owned a health insurance brokerage for nearly two decades and is well versed in both state and federal policies regarding health insurance coverage and health care reform.
Mark Hobraczk, JD
Mark advocated on behalf of the bleeding disorders community for 14 years before joining HFA in 2019. He was part of the government relations team with Patient Services Inc. (PSI) for 10 years and previously helped persons with bleeding disorders successfully apply for federal disability benefits through the ACCESS Program that became part of PSI.
Mark previously worked for nearly two decades to secure proper insurance coverage and payment for high-cost medical treatments. He directed advocacy initiatives for two national trade associations, supervised the reimbursement department for a medical device manufacturer, and managed institutional reimbursement programs for Wyoming Medicaid. Mark is based in the Tampa Bay area.
Michelle is an experienced executive in healthcare policy and advocacy. She has worked across many areas of healthcare, including payer relations, federal and state policy, and pharmacy concerns.
Most recently, Michelle served as the Chief External Affairs Officer with the National Hemophilia Foundation (NHF), responsible for NHF’s public policy strategy and agenda, and building key external partnerships.
As the mother of two sons with severe hemophilia, Michelle has spent over 32 years advocating and leading change in various roles. She has held several board positions throughout her career, including the Indiana Comprehensive Health Insurance Association, the Foundation for Complex Healthcare Solutions, and Community Health Charities.
In addressing healthcare challenges in rare disease, Michelle has led transformational change in the patient advocacy space, facilitating dialogue and collaboration between payers and providers. While at NHF, she created the Comprehensive Care Sustainability Collaboration, which is now being replicated by other national patient organizations.
Miriam Goldstein, JD
Miriam is part of the Public Affairs team at HFA, where her work centers on advocating for policies that ensure access to quality and affordable health care and coverage. Day to day, this might include: monitoring and analyzing federal legislation and regulations impacting insurance, Medicaid, and Medicare; working with HFA member organizations on state advocacy initiatives; engaging in efforts to safeguard blood and medical product safety; developing materials to help community members navigate the complex U.S. health care system; and more.
Before joining HFA, Miriam worked as a lawyer with the federal government and volunteered for many years with her local hemophilia association and the Committee of Ten Thousand.
Miriam lives in Arlington, Virginia, and is the mother of two adult sons with hemophilia. Most weekends you can run into (please don’t run into!) Miriam and her husband Dave on local bike trails.
Steven Pipe, MD
Dr. Steven Pipe is a Professor and the Laurence A. Boxer Research Professor of Pediatrics and Professor of Pathology at the University of Michigan, Ann Arbor, Michigan, USA. He is the medical director of the Pediatric Hemophilia and Coagulation Disorders Program and medical director of the Special Coagulation Laboratory. His clinical interests include bleeding and thrombotic disorders and congenital vascular anomalies. Dr Pipe also directs a basic research lab investigating coagulation factor VIII and the molecular mechanisms of hemophilia A. He has been actively involved in clinical trials with novel therapeutics for hemophilia including gene therapy. He was the 2015 recipient of the Leadership in Research Award from the National Hemophilia Foundation. He has served on the Board of Directors for the Hemostasis and Thrombosis Research Society, as Chair of the Board of Directors for the American Thrombosis and Hemostasis Network and most recently as Chair of the Medical and Scientific Advisory Council to the National Hemophilia Foundation.