Advocacy

Coalition Stakeholder Members

• Nathan Schaefer, Vice President of Public Policy, National Hemophilia Foundation
• Josie Gamez, Government Relations Manager, National Hemophilia Foundation
• Miriam Goldstein, Policy Director & Principal Legal Counsel, Hemophilia Federation of America
• Kollet Koulianos, Senior Director, Payer Relations, National Hemophilia Foundation
• Drew Clawson, Kinard Consulting, SC PhRMA Alliance Development
• Sean Singh, Vice President Operations, Hemophilia Alliance
• Annissa Reed, State Policy Manager, Eastern US, National Organization for Rare Diseases
• Kerri Nelson, South Carolina State Ambassador, Rare Action Network, National Organization for Rare Diseases
• Erin Foote Morgan, Partnership Director, Chronic Disease Coalition
• Alison Clifford, Director, Therapeutic Advocacy and Policy, Takeda
• Marcus Downs, Associate Director of U.S. Public Affairs, Southeastern Region, Takeda
• Karla White, Senior Manager for U.S. Patient Advocacy, CSL Behring
• Emily Ogden, Government Affairs, CSL Behring
• Vitoria Cunningham, Government Affairs, Pfizer
• Melissa Bishop-Murphy, Senior Director, National Government Relations & Multicultural Affairs, Pfizer
• Gina Marie Dalferro Truslow, Senior Manager, Patient Advocacy Relations, Genentech
• All Copays Count Coalition, Anna Hyde, VP Advocacy and Access, Arthritis Foundation

Advocacy Ambassadors

A vital component of the Advocacy Coalition is the Ambassador Program, which comprises volunteer members in leadership positions tasked with establishing a strong grassroots network of bleeding disorders advocates throughout the state.  Ambassadors serve as liaisons between the Advocacy Coalition and the public, focusing on increasing awareness of rare bleeding disorders and the challenges individuals and their families affected by them face. They also function as “county captains,” meaning that they serve as a regional or county resource and connection for people who have been, or have family members who have been, newly diagnosed, or who, for whatever reason, simply need information about issues (e.g., school nursing; educational resources; clinics and hospitals) relevant to bleeding disorders, particular to that county or region of the state.  If you would like to be put in touch with someone in your county who may be a helpful source of information and support to you and your family, please contact the chapter, and we will put you in touch with someone who can help.