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 
February 28 – March 1
State Advocacy Days

Please join us for our annual State Advocacy Days being held in Columbia at the Capitol. Registration is open and your voice is needed to help keep access to treatment care available without barriers!

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!


Support Group activities and Fundraisers
February 23, 6:30pm

Join our Ultra Rare Bleeding Disorders Community as we celebrate Rare Disease Day and unite our community.  Priority will be given to those with Ultra Rare and Platelet disorders, however all community members are welcome to register. Learn more here and register today! 

Read in the events schedule all we are doing to celebrate the National Bleeding Disorders Awareness month of March and use our awareness sign to share on Social Media! How are you going RED?

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!


Upcoming Virtual Events & Meetings
January 26

7:00pm In Office & Virtual Meeting

We welcome you all back to continue our work in 2023 on raising our voices in Health Equity for the Bleeding Disorders Community in South Carolina.

February 2
State Advocacy Days – Pre- training Meeting

7:00pm

Whether you are new to state advocacy days or a seasoned advocate, join us for a quick pre-training meeting as we prepare for our 2023 State Legislative day on March 1st.

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.