FDA Approves Gene Therapy for Hemophilia B

CSL’s HEMGENIX ® (etranacogene dezaparvovec-drlb) provides a new treatment option that reduces the rate of annual bleeds, reduces or eliminates the need for prophylactic therapy and generates elevated and sustained factor IX levels for years after a one-time infusion. With the approval of HEMGENIX, CSL now offers an even more comprehensive portfolio of treatments for people living with hemophilia B, ushering in a new era of treatment options. The FDA approval is supported by results from the ongoing HOPE-B trial, the largest gene therapy trial in hemophilia B to date. Results from the study demonstrated that HEMGENIX allowed patients to produce mean factor IX activity of 39 percent at six months and 36.7 percent at 24 months post infusion.

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The National Hemophilia Foundation defines bleeding disorders as a group of disorders that share the inability to form a proper blood clot. They are characterized by extended bleeding after injury, surgery, trauma or menstruation.

We have many programs, educational opportunities, and events to help individuals and their families connect to the South Carolina bleeding disorders community. BDASC also provides networking and support services.

Advocacy is a key component of our mission at BDASC. It is also important to those affected by bleeding disorders in assuring health care needs are being met especially when living with a rare and chronic, lifelong disorder.

The Bleeding Disorders Association of South Carolina (BDASC) welcomes you to register with our non-profit organization allowing us to keep you informed while providing programs and services to you and your family. Become a member today and join our community focused and patient driven organization.


Serving the bleeding disorders community!

The News Infusion

Published quarterly by  Bleeding Disorders Association of South Carolina as an informational service for its members, friends, and affiliations of South Carolina’s bleeding disorder community. The News Infusion provides communication connections, education, and advocacy awareness. READ >>

Upcoming Community Connections 
June 22

Join us for a community engagement dinner presentation on setting “Big Goals, Small Steps”. Sponsored by Sanofi!


The Fish Market, 990 Market St., Fort Mill, SC 29708

June 9-10
50th Annual Meeting and HELLO Conference

Join the community in Greenville for our 50th Annual Meeting; our Friday Night Gala to Celebrate, and our HELLO Educational Conference. Check it out and be sure to register today!

July 23

Save the date to join us for our Back to School Night at the Greenville Drive! Additional information to come soon. Registration is required.

Support Group activities and Fundraisers
September 22

Par for the Clot Fundraiser! Join the community with our partners and friends for the best charity golf tournament in the upstate! You will be sure to have a great time.

August 10 – 13
Carolina Crew Teen Retreat

North and South Carolina will come together once more to bring our teens with bleeding disorders a 4-day fun-filled Teen Retreat at Camp Canaan in Rock Hill, SC. Registration is open on our Teen Support Page!

Upcoming Virtual Events & Meetings
june 13

7:00pm Virtually and in the Office

2023 T-Off Committee! Time to Kick off the best charity golf in the upstate. Join us for our monthly meetings and let’s get this event rolling. Register to join us today!

Next Event Coming Soon!
Next Event Coming Soon!

How can we help?

BDASC, formerly Hemophilia of South Carolina, 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 state’s capitol. Today, BDASC serves all 46 counties in the state, currently providing education and support services to over 1000 individual members and their families now in 39 counties. BDASC provides the most current information and education in topics related to bleeding disorders, treatment therapies, insurance, and advocacy. BDASC relies on a strong volunteer base of it’s board of directors and members. Without our volunteers, we could not serve our mission.

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We Care About Your Mental Health!

Mental health care matters. It is important to maintain our mental health as well as we maintain our physical health. Learn about some resources and tools from National Bleeding Disorder Organizations, National Mental Health Organizations, as well as some South Carolina focused groups to help support your mental well-being.

We Support advancing Research For revolutionizing treatments and health care 

We rely on the Support from our community

There are many ways you can make in a difference in the lives of those affected by bleeding disorders. 

volunteers are our lifeline to the future

let us help you find a home in our organization!

Enjoy Learning More about us



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 living with a bleeding disorder.

2022 Par for the Clot Fundraiser helps to raise the awareness for bleeding disorders.