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 
March 31- April 2
Men and Women’s Adult Retreat & Medical Symposium

Join us in downtown Greenville for this exciting adult community event for men and women living with bleeding disorders themselves, are carriers of a genetic bleeding disorder, or are caretakers of someone with a bleeding disorder. Registration is opens!

April 17
Celebrating World Hemophilia Day

Join us in Greenville for a community wide engagement dinner event in celebration of World Hemophilia Day hosted in downtown Greenville at the Westin Poinsett Hotel. Register today, and learn more about this event on our World Hemophilia Day website page here!

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
Feb 28 – April 17

BDASC’s Red Tie Campaign runs from Rare Disease Day, February 28th through World Hemophilia Day on April 17th.

We will be celebrating All Bleeding Disorders throughout this time. Join us, and together let us raise funds to support the community with our Red Tie Campaign! Thank you!

May 6

Start building your team now and get ready to STEP into action at the 10th Annual STEP for Bleeding Disorders Walk / Run Awareness Campaign and Fundraiser in Columbia at the Saluda Shoals Park!

This is our largest fundraiser and is available for all to attend. Gather your family and friends and join us in support! Check out our fundraising page for all the information on this fun and engaging event!

May 11

Join the ladies of BDASC for a community gathering of support and celebration during the Mother’s Day Weekend! We will have a conversation around Mindfulness! Register today. Space is limited so don’t wait.

May 16

Join us as we celebrate our women in the community for a community engagement dinner presentation on parenting children with chronic conditions. Resister today. 

Upcoming Virtual Events & Meetings
April 6

7:00pm Virtually

Join us for our “STEP” Volunteer Kickoff virtual gathering as we discuss volunteer opportunities for the community at the walk! Don’t forget to register to join us on May 6th!

Next Event Coming soon!
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.


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.