BDASC

News

Download the 2022 PDF Calendar of Events: CLICK HERE

PLEASE READ AND VIEW OUR COVID – 19 MITIGATION POLICY AND WAIVER RELEASE TO ATTEND LIVE EVENTS: CLICK HERE

Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy

The onset of childbirth and the postpartum period are times when women with von Willebrand disease (VWD) are at an increased risk for excessive bleeding, exposing them to further, and in some instances, serious complications. While there exist therapies with VWD-specific indications, it is not uncommon for these patients to still experience excessive bleeding while receiving treatment. These scenarios are challenging as there is sparce clinical data and a subsequent lack of clear guidance on the optimal management of bleeding in these particular settings. 

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Study in hemophilia B achieved primary endpoint of non-inferiority

Largest gene therapy study in hemophilia B achieved primary endpoint of non-inferiority in annualized bleeding rate after stable Factor IX (FIX) expression, assessed at 18 months following a single dose of etranacogene dezaparvovec. Etranacogene dezaparvovec also achieved secondary endpoint demonstrating statistical superiority in reduction of annualized bleeding rate compared to baseline FIX prophylactic therapy. Stable and durable FIX levels with mean FIX activity of 36.9 percent of normal in full study population at 18-months, compared to a mean of 39.0 percent of normal at 6 months. Manufacturing operations supporting process validation of etranacogene dezaparvovec successfully completed by uniQure.

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Lower Patient Copay Act Advances

More than 140 groups representing patients with serious and chronic conditions this week sent a letter to House Representatives Donald McEachin (D-VA) and Rodney Davis (R-IL) voicing support of their recent introduction of H.R. 5801, the Help Ensure Lower Patient Copays Act (HELP Copays Act). The legislation, which included seven additional co-sponsors from both sides of the aisle, is a two-part solution that helps ensure patients can cover their out-of-pocket costs and access needed medications.

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McEachin, Davis Introduce Bipartisan Legislation to Prevent Increased Prescription Drug Costs

Washington, D.C. – Today, Congressman A. Donald McEachin (VA-04) and Congressman Rodney Davis (IL-13) introduced the Help Ensure Lower Patient (HELP) Copays Act to protect patients from increased out-of-pocket prescription drug costs.
The bipartisan bill builds on previous efforts to lower out-of-pocket (OOP) costs for patients by prohibiting the use of copay accumulator programs, ensuring insurers cannot exclude the value of pharmaceutical manufacturer cost-sharing assistance from counting toward an enrollee’s annual cost-sharing limit.

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Happy New Year 2022!

Happy New Year! It’s a new year and we celebrate our new name and website. While some things have changed, we have not changed in our resolve, determination, and our mission to serve the South Carolina Bleeding Disorders Community.

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Prisma Health expands Hemophilia Treatment Center to Greenville

GREENVILLE, S.C.— Prisma Health has expanded its Hemophilia Treatment Center to include an office in Greenville as well as Columbia. Prisma Health has South Carolina’s only federally supported comprehensive hemophilia treatment center, serving a growing number of both children and adults across the state. “Our mission

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The First National Patient Satisfaction Survey of U.S. HTCs

The federally funded hemophilia treatment center (HTC) network, with its model of a multidisciplinary care team (MDT) and regional infrastructure, has proven itself, over several decades, to be well suited to deliver quality, integrated healthcare to bleeding disorders patients across the U.S. While this system

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SPG in the Community – “Par for the Clot 2020”

SPG Construction was blessed to be able to participate in the 2020 “Par for the Clot” charity golf tournament held at The Preserve at Verdae golf course in Greenville, SC on September 11. The Preserve at Verdae is a really spectacular course. And this was

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Help Us Continue Our Success! Hear our Stories

Bleeding Disorders Association of South Carolina welcomes you to register with our non-profit organization so we can keep you informed with information on events, advocacy initiatives, treatments therapies and research, fundraising opportunities, and educational and social networking opportunities. We invite those who are affected by bleeding disorders to register as well as individuals, families, friends and affiliates who are interested in supporting our organization and share our mission. You can download the registration form and fax, mail, or e-mail it to the Chapter, or you may register online. Welcome to Bleeding Disorders Association of South Carolina!