BDASC

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 
December 10

Join us for one last gathering of the year in Columbia for Winterfest with BDASC! 


Fundraisers and Support Groups

Upcoming Virtual Events & Meetings
November 16

Wednesday Webinar Series @ 2pm


Register to join NHF and Lena Volland, Director of Education at NHF, for their Wednesday Webinar Series.  Lena returns to elaborate on von Willebrand disease. Register at http://www.hemophilia.org to attend.  If you are unable to attend live, check our NHF’s website after the webinar to find a recording of this and past sessions.

November 30

Wednesday Webinar Series @ 2pm.

Register to join NHF and Maureen Parsons, NHF Director of Individual Giving, for their Wednesday Webinar Series.  Maureen will be discussing the impact and importance of Giving Tuesday and end-of-year giving Register at http://www.hemophilia.org to attend.  If you are unable to attend live, check our NHF’s website after the webinar to find a recording of this and past sessions.

Next Meeting 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

LEARNING TO BECOME RESILIENT IN 2021

WE LEARNED A LOT IN 2021 ABOUT BEING RESILIENT AND CONTINUING OUR MISSION EVEN IN THE MOST CHALLENGING OF TIMES. 

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.