As we begin planning for the 2026 legislative season, it’s important to take a moment to reflect on the progress we’ve made through our advocacy efforts in 2025. This past year was filled with impactful events, meaningful conversations, and a strengthened commitment to advancing the needs of those living with bleeding disorders and rare diseases across South Carolina.
A Strong Start: Legislative Breakfast at the Capitol
We launched our 2025 advocacy season with our annual Legislative Breakfast in January, welcoming South Carolina lawmakers and their staff to join us for breakfast on the opening day of the legislative session. This informal and welcoming setting offered a valuable opportunity to connect, share stories, and build relationships with those shaping state policy. We are pleased to share that our next Legislative Breakfast will take place on January 14, 2026, at the State Capitol—we hope you’ll join us again for this meaningful tradition.
Raising Our Voices: State Advocacy Days
In February, we hosted our annual State Advocacy Days to kick off Bleeding Disorders Awareness Month in a powerful way. This event brought together over 70 advocates—community members, families, and partners from across the state and country—to make our voices heard at the Capitol in Columbia.
The evening before our legislative meetings, we gathered for a community dinner, heard personal stories, and received advocacy training from both national and local leaders. The following day, we met with legislators to discuss our priority issues and share the real-life experiences behind our policy goals. We’re proud of the energy and unity displayed throughout the event—and we’re excited to announce that Advocacy Days 2026 will be held on February 24–25.
Making an Impact: House Bill 3934
As the legislative session drew to a close in May, we were hopeful for the chance to present House Bill 3934 before the House of Representatives. On May 7th, just before the session adjourned, we secured a critical hearing—thanks to the support and persistence of our community advocates and partners.
We were proud to be joined by several members of the bleeding disorders and rare disease communities, all of whom helped amplify our message. A special thank you goes to Representatives Hardee and Schuessler for their dedication. Representative Carla Schuessler offered a thoughtful and impactful introduction of our bill, helping to raise awareness and momentum for the challenges we face. (Watch the video here.)
Honoring Our Legislative Champion
Each year at our HELLO Conference & Annual Meeting, we take time to recognize a lawmaker who has demonstrated outstanding dedication to advancing the needs of individuals and families affected by bleeding disorders in South Carolina. This recognition, our Legislative Advocate of the Year Award, is presented to a public servant who not only supports our mission but also actively works to make lasting change through policy and advocacy.
This year, we were proud to present the award to Representative Carla Schuessler, whose efforts have made a significant impact on our community. As a co-sponsor of House Bill 3934, Representative Schuessler has shown steadfast leadership and a deep understanding of the challenges faced by those living with rare and chronic conditions. Her commitment to improving access to care and ensuring that the voices of patients and families are heard at the state level has been both inspiring and impactful.
Through her ongoing support, Representative Schuessler has helped elevate the visibility of bleeding disorders in legislative conversations, and her advocacy has brought us one step closer to meaningful change. We are truly grateful for her partnership and dedication in helping us move our mission forward.
Please watch a video update from our Legislative Coordinator, James Romano, as he recaps the highlights of the 2025 Legislative Session.
In this short video, James breaks down key legislative wins, important updates, and the progress we’ve made in advocating for the bleeding disorders community across South Carolina. You’ll also get a glimpse into what’s ahead as we continue our work at the state level.
Looking Ahead: Building Stronger Advocates
Looking forward to the upcoming months, we have a fun and engaging advocacy program planned. We’ll be gathering in Myrtle Beach on October 17–19 for our annual Fall Advocacy & Medical Symposium (FAMS). During this weekend, advocates will come together to prepare for the upcoming legislative session, sharpen their skills, and strengthen their voices. Whether you’re a seasoned advocate or just starting out, this is a powerful opportunity to learn, connect, and grow within our community. We invite all current and interested advocates to join us and be part of the movement.
As we look toward 2026, we do so with renewed focus and determination. Advocacy is not just about policy—it’s about people, and your continued support allows us to amplify every voice in our community. Together, we’re building a stronger, healthier future for all South Carolinians living with bleeding disorders.
Stay tuned for ways to get involved in the months ahead. We can’t wait to continue this work with you.