Join us for an afternoon of policy & advocacy
12:45 – 1:15 pm | Advocacy Working Group/Member Org. Rap Session
1:15 – 2:15 pm | Gene Therapy: Policy Issues
Stay for open discussion format for member organizations and advocacy working group members to discuss policy and advocacy issues on the local level.
2:15 – 3:00 pm | Under the Rotunda: Federal & State Updates
Our Public Affairs Team works on a plethora of issues each day. Hear what’s happening at federal and state levels and how our efforts are impacting the bleeding disorders community.
Lindsay Cox is the Senior Manager for Advocacy & Outreach for the Hemophilia Federation of America (HFA). In her role at HFA, Lindsay leads and manages the Young Adult Advocacy Summit (YAAS), the Policy & Government Relations internship, and the annual Fly-In/Week of Advocacy and Congressional Reception. She leads the Public Affairs team’s advocacy education efforts, assists the HFA policy team with federal policy and regulatory efforts, supports HFA member organizations on state advocacy and policy initiatives. Prior to joining HFA in 2021, Lindsay served as the Director of Engagement and Strategic Innovation for the New York City Hemophilia Chapter and the Coalition Manager for the New York State Bleeding Disorders Coalition. As an experienced advocate based in Albany, New York, Lindsay was integrally involved in the passage of numerous pieces of legislation in New York State, including those regarding anti-mandatory mail order, non-medical switching, the creation of a Rare Disease Advisory Council, March is Bleeding Disorders Awareness Month, and more. Lindsay has been a featured speaker and facilitator on topics such as coalition building, creative methods for advocacy training, storytelling techniques, and ways to connect community members and legislators. She holds Bachelors of Arts in Political Science and Philosophy, Politics, and Law from Binghamton University, graduating in 2017 with President’s Honors.
Mark Hobraczk, JD, MPA
Mark Hobraczk is the newest member of the HFA advocacy team, serving as the Senior Manager for Policy. He has worked on behalf of the bleeding disorders community for 15 years through the government relations team at Patient Services Inc. and the ACCESS Program (which provides legal representation to persons applying for federal disability benefits.)
Mark previously had a decade of experience expanding access to care for exceptionally high-cost medical treatments, including cochlear implants, home infusion therapies, home oxygen, and power wheelchairs. He managed the institutional reimbursement programs for Wyoming Medicaid, supervised the reimbursement department for a medical device manufacturer, and directed government relations efforts for national associations representing hearing/speech professionals and medical equipment suppliers.
Mark received a Juris Doctor from the University of Denver, a Master of Public Administration from the George Washington University, and a Bachelor’s in Economics from Rutgers University.
Michelle’s passion for advocacy for the bleeding disorder community has been an integral part of her career. As the mother of 2 sons with severe hemophilia and a patient herself, she has been involved in the bleeding disorder community in various capacities, both personal and professional, for 31 years.
Miriam Goldstein, JD
Miriam is Director of Policy and Principal Legal Counsel with HFA, where her work includes monitoring and analyzing federal legislation and regulations impacting patient access to care; insurance, Medicaid, and Medicare issues; blood and product safety; and more. Before joining HFA, Miriam worked as a lawyer with the federal government, served for many years on the board of her local hemophilia association (HACA), and volunteered with the Committee of Ten Thousand.
Miriam lives in Arlington, Virginia, and is the mother of two adult sons with hemophilia. She graduated from Yale University (BA) and the University of Pennsylvania Law School (JD).