BDASC

Education

BDASC Educational Videos >>
BDASC Educational Videos

At our organization, we are dedicated to providing accessible and top-notch online education resources to empower every individual within the bleeding disorders community, spanning from parents of young children to adults. Through our platform, we aim to facilitate direct connections with individuals who share similar experiences. Whether you are seeking guidance on insurance matters, learning to embrace the need for advocating, or seeking support in managing the daily challenges associated with a bleeding disorder, our ultimate goal is to equip you with the knowledge, support, and tools necessary to thrive and embrace a fulfilling life. 

Learn about the South Carolina Bleeding Disorders Community in our New Series to raise awareness and share our experiences in less than 180 seconds.

Annual Meeting & Hello Conference Conversations: 

“Growing up with my father in the bleeding disorders community has given me a unique perspective and deep appreciation for our shared journey. Attending the annual conference is something I look forward to every year, as it brings us all closer and strengthens our bond.”

– Adonis Rabb

“Being born with Hemophilia A has been a journey filled with challenges and growth. The Annual Hello Conference is a highlight for me, as it brings the invaluable benefit of connecting with friends and sharing experiences within our supportive community.”

– Warren Ingram

 

“Joining the bleeding disorders community at just 5 years old taught me the vital difference between being lazy and taking the necessary time to let my body heal. Embracing patience and self-care has been key to living a healthy life.”

– Felicity Harkins

“Living with Hemophilia from birth has shaped my resilience and perspective. My aspiration for the bleeding disorders community is to see increased awareness, innovated treatment options, and a strong, unified support system for South Carolina.”

– James Whitmire

 

 

Learn about our Events and Fundraisers:

2024 BDASC Annual Meeting and Hello Conference
This annual gathering is more than just a meeting; it’s a lifeline for individuals and families affected by bleeding disorders. Our conference offers an invaluable opportunity to stay connected, engaged, and informed. Whether you’re seeking support, education, or simply the chance to connect with others who understand your journey, the Annual Meeting and Hello Conference is the place to be. Together, we strengthen our community, share our experiences, and build a brighter future for everyone living with bleeding disorders.

BDASC 2023 Par for the Clot Charity Golf Tournament
140 golfers and 30 volunteers raised funds to support the unique needs of individuals and families in South Carolina who live with bleeding disorders. PGA Profesional Perry Parker, a Community Advocate with CSL Behring, the Title Sponsor, helped in the cause, along with Kyle Blakely, Long Drive Professional with Charity Golf International helping participants to support the mission work of the nonprofit, raising the most funds ever this year for the organization. Charity Golf Guns entertained the participants with excitement, and BDASC’s President, Aaron Smith, spoke of the importance of the Par for the Clot in raising funds to support the over 1200 individuals and families the organization supports.

BDASC 2022 Par for the Clot Charity Golf Tournament
The 8th Annual Par For The Clot Charity Golf Fundraiser at the Preserve at Verdae was a huge success! Over 165 participants, volunteers, and guests gathered for the day to raise funds to support individuals and their families living in South Carolina who are diagnosed with bleeding disorders. The event was not just a fundraiser, but had a mission to educate the general public and assure those in need of support knew BDASC was there to provide them a sense of hope, community and family. Over $54,000.00 was raised with a large portion of the proceeds going to support the organization’s advocacy initiatives for access to quality care, treatment and research.

“The Carolina Crew” Teen Retreat
The Bleeding Disorders Association of South Carolina and their northern partner, Bleeding Disorders Foundation of North Carolina, yearly collaborate to host a four-day, three-night retreat for teens and teen family members impacted by bleeding disorders. Each year, 30 or more teens come from all regions within each state to embark on summer camp venues in both states. Teen Retreats give participants a chance to bond and connect with other teens facing some of the same challenges’ they may have, but also allows them to just be teens in a fun and engaging outdoor environment.

Our dedication to advocacy:

2024 Advocacy
The Bleeding Disorders Associations of South Carolina (BDASC) shares the journey of their advocates as they raise awareness of the need in South Carolina for access to quality and affordable treatment care for those living with bleeding disorders. The videos shares the current lack of access to quality treatment care with the United Healthcare and Prisma stalled negotiations and their journey for the past two years to pass legislation to make all copayment count in state regulated healthcare policies. BDASC invites everyone to make their voices heard.

2023 Advocacy
Members of the Bleeding Disorders Association of South Carolina gathered for training on Rare Disease Day in preparation for their Annual State Awareness and Legislative Day held on March 1st at the State Capitol in Columbia. The 2023 priorities were advocating for passing H.3618 and continued funding for the state Hemophilia Assistance Program.

Treatment and Medical Information:

2021 Medical Symposium
The opening session of the Inaugural 2021 Bleeding Disorders Medical Conference, April 23-24, 2021 provided a quick overview of Hemophilia of South Carolina, now known as Bleeding Disorders Association of South Carolina, who they are, what they do, the advocacy work within the organization, and the impact of having a bleeding disorder within the community.

2021 Medical Symposium Part II
This session took an in-depth look at the healthcare teams that treat bleeding disorders patients in the state at the federally supported Prisma Hemophilia Treatment Center (HTC), the newly formed Prisma satellite HTC in the Upstate, and the HTC clinic at MUSC which treats many of our coastal community patients.

2021 Medical Symposium: Shemophilia – Women living with Bleeding Disorders with
The session brought a robust conversation with education on women and bleeding disorders. The session also covered women who are carriers of a bleeding disorder. Dr. Sarah O’Brien presented, and is a pediatric hematologist at Nationwide Children’s Hospital and an Associate Professor of Pediatrics at The Ohio State University College of Medicine.

2021 Medical Symposium: Hemophilia Awareness Series
The Symposium began with Dr. Joanna Davis, the medical director of the pediatric Hemophilia Treatment Center at the University of Miami. She spoke on the Hemophilia Awareness Series which has been educating medical personnel across the United States for 13 years. The program educates physicians, nurses and the medical community on the treatment of Hemophilia in hospitals and emergency rooms.

HELLO Conference KeyNote: The paradigm shift in hemophilia treatment
Dr. Robert Sidonio of Children’s Healthcare of Atlanta identified the current state of hemophilia treatment and the impact gene therapy could potentially have on treatment. Attendees had the opportunity to ask questions and engage in conversation with Dr. Sidonio about the current gene therapy trials.