February 28, 2018
9:00 am - 1:00 pm
South Carolina State Capitol
South Carolina Rare Disease Day Advocacy Event
February 28, 2018 at 9:00am
South Carolina State Capitol, 1100 Gervais St, Columbia, SC 29201
South Carolina Rare Action Network has partnered with Hemophilia of South Carolina (HSC) Advocacy Days event on Rare Disease Day! We will be joining HSC at the state capitol with an information table to educate passerby’s on rare diseases. We will also be coordinating some legislative visits while at the capitol.
About the Hemophilia of South Carolina: Hemophilia of South Carolina (HSC) is a 501 (C) 3 Non-Profit organization and is a Chapter of the National Hemophilia Foundation (NHF) and a Chapter Member of Hemophilia Federation of America (HFA). HSC was founded in 1973 by a group of parents interested in promoting awareness, providing group support, and assisting other national hemophilia organizations. The organization for 42 years existed as all-volunteer; providing programs and education, support and advocacy for access to care at the states capitol. Today, HSC serves all 46 counties in the state, currently providing education and support services to over 900 members and their families in 38 counties. HSC provides the most current information and education in topics related to bleeding disorders, treatment therapies, insurance and advocacy. Today, HSC has one full time executive director and part time staff members but relies on a strong volunteer base of its board of directors and members. Without our volunteers, we could not serve our mission.