Bleeding Disorders Association of South Carolina

“Once the form 990 is completed, it is presnted at the first scheduled board meeting for all board members to revirw and approve”

“The board of directors determines executive director compenstion based on comparable compensation paid for similiar positions at other state hemophilia chapters”

“Hemophilia of south carolina maintains a web site whereby most relevant documents are available to the general public. Interested parties may contact the chapter and request other documents as appropriate. Contact numbers and addresses are posted on the web site.”

“OTHER PROGRAM SERVICES 4: National Annual Meeting Education and Research Support As a chapter of the National Hemophilia Foundation, and a member organization of Hemophilia Federation of America we encourage our community members to attend the Annual Meetings of these important national organizations. We provide direct financial assistance to individuals and their families to attend. This year due to COVID-19, we were not able to support families and / or individuals affected to attend national meetings in person, however we did encourage participation virtually. In a normal year, this financial support provides community members the opportunity to learn about bleeding disorders at the national level, network with individuals around the nation and receive many national support services. We supported direct financial support for research, and global financial support for initiatives of the National World Hemophilia Foundations. . OTHER PROGRAM SERVICES 5: Washington Days: Members of HSC advocated virtually with over 400 members of the national community at the Nations Capital in March. Our Chapter represented the state of South Carolina in advocacy to help address continued access to care and treatment. We participated in six meetings with our US Congressmen. OTHER PROGRAM SERVICES 6: Educational Conference & Events OTHER PROGRAM SERVICES 7: Mens, Womens, Young Families Support Groups: We provide sub-group support and educational programs to young families, men, and women located in all regions of the state. These programs foster educational support, empowerment, and friendship while living with a bleeding disorder. Most the events were available virtually this year due to COVID-19. OTHER PROGRAM SERVICES 8: Outreach Support: In 2021, we supported over 55 virtual and in person educational outreach programs throughout the state; to include the Upstate, Midlands and Lowcountry. These educational events can ease the need for long distance travel for our community. Education included various topics such as scholarship assistance, camps, insurance, healthcare policies, and advocacy seminars. This year we provided educational and networking support to hundreds of families virtually. The chapter supported outreach education and awareness campaigns during the National Bleeding Disorders Awareness Month of March and supported 12 state county and city proclamations. OTHER PROGRAM SERVICES 9: Winter Year-End State Meeting and Holiday Celebration: The winter state-wide meeting is Hemophilia of South Carolinas year-end meeting of the Chapter and the attendance was over 220 participants; adults, children and teens. This year due to COVID-19, we canceled the event due to a high COVID outbreak throughout the nation. We hosted several virtual events in celebration however. We also highlighted the chapters accomplishments in a one-day community event. OTHER PROGRAM SERVICES 10: Hemophilia of South Carolina Teen Retreat The teen retreat allowed teens ages 13-18 years with a bleeding disorder, or who have a sibling or parent with a bleeding disorder to come together for a four day weekend to build friendships, independence, learn self-advocacy skills and provide mentoring opportunities. Teens benefited by attending educational programs along with outdoor activities to promote friendships and build of a support system. Our program this year was specifically designed to provide encouragement in difficult situations which is sometimes a result of living with a bleeding disorder. The event was provided virtually due to COVID-19. This year we provided this opportunity to 22 teens. OTHER PROGRAM SERVICES 11: Hemophilia of South Carolina Chapter Day at Camp Burnt Gin: HSC partners at camp each year with the South Carolina Hemophilia Treatment Center and the States Department of Health and Environmental Control. Our goal is to provide a special Chapter day and activity event for kids with Bleeding Disorders from around the state and patients of the Palmet”