Recreational

We are excited to invite the South Carolina members of the bleeding disorders community to join us for our statewide educational and community connections, Annual Family Advocacy Camp. We are hosting family camp this year in our host hotel as we wait for our 2025 camp venue. We will enjoy a family camp theme with activities and educational sessions for everyone. Our Medical Symposium track will host our Industry Forum during our morning breakout sessions with companies of your choice to choose from to discover and learn about their product pipelines and any new innovative treatment options available to treat bleeding disorders. Sessions begin promptly at 10am.

We will also take an overarching quick look at the current landscape of healthcare access to treatment care for those living with bleeding disorders in South Carolina, including resource information when access barriers become a reality. We will discuss together; how we can move forward with women’s diagnosis and treatment care, serve our platelet and rare bleeding disorders community, and advance VWD treatment and diagnosis. We will hear updates within our treatment centers and health agencies with information important to those living with bleeding disorders.

Discover how members of the bleeding disorders community can become great stewards in their own health care needs. How can we together advance patient-centered affordable treatment care and shared decision making to drive positive healthcare outcomes and reduce our healthcare costs? Listen to the stories of those with lived- experience within the rare disease community and how they navigate barriers with access to care. Learn to advocate and share your voices for change in policies that affect this community. The Fall Family Advocacy Camp will look at health care today and help us prepare for the future. We are working to have host of local and national speakers well versed with information and we are grateful to all who are helping to make this another fantastic educational and supportive weekend for everyone.

Hotel accommodations will only be provided to those who plan to attend all educational sessions and activities on Saturday, Saturday evening, and Sunday morning. Members may still enjoy the educational day sessions and connections on Saturday without the hotel accommodations.

Members may also register for the Pathfinders Hike separate from Family Camp on Sunday. Registration is still required to attend.

Family Camp Highlights Include:

Product & Services Updates, Advocacy Training and Awareness, Teen and Children Transitioning, Family Connections Activities, and Community Empowerment!

Wellness and Health Track: We are delighted to host the newest national bleeding disorders program during our Family Advocacy Camp provided by GutMonkey- Pathfinders! We will discover the beauty of the outdoors while forging lasting connections with others who understand the journey.

• Become one with Empowering Nature Walks surrounded by the calming presence of nature.
• Discover Educational Insights: Learn to manage bleeding disorders in the great outdoors.
• Supportive Community Connection: connect with others in the community, fostering a sense of camaraderie and understanding; share experiences, stories, and triumphs – discover you are not alone.
• Advocacy Awareness; raise awareness for positive change for access to resources for bleeding disorders
• Celebrate Resilience by commemorating the resilience of this community and the inspiring moments of this event