At the BDASC we strive to make every tomorrow for the Bleeding Disorder Community better than today. The services we provide help individuals and families reach their highest potentials, removing any barriers, while they transform their futures, learning to live with a Bleeding Disorder. We provided the opportunity for learning self-infusion clinics with training provided by our Hemophilia Treatment Center staff. We help teens transition to adulthood with Teen Retreats and educational opportunities where they learn to build self-confidence, competence, and advocacy skills. By providing support for Children’s Camps, we help parents send their children to camp where both the parents and kids get their first taste of independence. For young children, summer camp is where they build memories and friendships that will last a lifetime with kids who face the same challenges they do living with bleeding disorders.. As part of the World Federation of Hemophilia, our chapter participates in the WFH Chapter Challenge Program where chapters help provide all the funding for getting donated Factor products from manufactures to the developing world. This program is completely support by the National Chapters and their donations each year. We are proud to be part of this important initiative to transform the future of the developing countries with access to treatment care, bettering their daily lives with treatment access.

The South Carolina Hemophilia and Bleeding Disorders Advocacy Coalition

Our Coalition’s Mission: To Empower the Hemophilia and Bleeding Disorders Community in South Carolina to speak to public and private decision-makers about improving Access to Quality and Affordable Health Care and Treatment.

We are thankful to the South Carolina Advocacy Coalition Committee Members who came together from all regions throughout the state and nationally to form the South Carolina Hemophilia and Bleeding Disorders Advocacy Coalition (SCHBDAC). Our commitment to all South Carolinians affected by bleeding disorders is to improve access to Affordable Quality Care and Treatment. Improving lives is our mission.

How do we do this? With a strong grass roots year-round Advocacy Coalition and Ambassador Program, we advocate here at home with our annual State Legislative Days in March, raise awareness during the National Bleeding Disorders Awareness Month of March, lighting our own hometown office city of Greenville Red, attend NBDF's yearly Washington Days along with 46 states and over 450 members advocates, and secure proclamations throughout all cities and counties in South Carolina! With quarterly trainings throughout the year, our advocates are informed and always ready to take action!

We are proud to be a member of the National Hemophilia Foundation State Based Advocacy Coalition (SBAC) program and are a proud recipient of the Advocacy & Public Policy Chapter of Excellence Award of the National Bleeding Disorders Foundation in recognition of our commitment to advocacy and education initiatives both at the state and local level, aimed at improving the lives of those in the bleeding disorders community.

Judith Graham Pool Postdoctoral Research Fellowship

The Bleeding Disorder Association of South Carolina supports the National Bleeding Disorders Foundation’s premier research fellowship program which is named in honor of Dr. Judith Graham Pool. Established by NBDF in 1972, the Judith Graham Pool (JGP) Postdoctoral Research Fellowships have provided a long legacy of support for basic science and pre-clinical research in bleeding disorders. In 1965, Dr. Pool discovered a method of extracting clotting factor from human plasma to formulate cryoprecipitate. This breakthrough opened the door to a series of research developments that would revolutionize treatment for hemophilia and ultimately lead to its management through recombinant replacement factor and current extended half-life therapies.  

Since the program's inception, NBDF has funded numerous scientists whose projects have produced vital insights into hemophilia and other bleeding disorders. JGP research fellowship award projects have contributed to the development of safer concentrates, enhanced methods of testing and screening, and have laid the groundwork for current advances in gene therapy for hemophilia.

Each year, BDASC provides direct funding support to the JGP through our fundraising proceeds. A small portion of the funds raised each year is donated to the JGP research in support of enhancing innovations in treatment care. Your donations allow you to have a direct hand in our hope for a cure for bleeding disorders. Thank you for helping support research for a cure!

State of the Science Summit

BDASC is proud to have participated in the State of the Science Summit and host one of the nations live groups, having a direct voice in the research for our future!

National Bleeding Disorders Foundation (NBDF) hosted the State of the Science Research Summit, September 12-15, 2021, bringing the community together to identify the most important areas of research that can make a real, lasting difference on life with a bleeding disorder. To get this right, they needed input from our greatest experts on these topics: our community!

In particular, it was very important to NBDF to include the perspectives of underserved segments of our community. So they created a series of remote participation groups, to include individuals with bleeding disorders or caregivers who represent distinct race/ethnicity populations (for example, African Americans, Asian Americans, Indigenous persons, Mexican and Central American Hispanic individuals, etc.). NBDF's goal was also to include individuals in each group who have diverse experiences based on their disorder, gender and sexual orientation as well.

Supported by a moderator, participants came together during the Summit to discuss the dialogue and provide real-time comments to the panel participants about how well the research ideas met their specific needs. The commentary from these sessions will be included in NBDF's manuscript to define the research path forward for the community. Further, they expect to reconvene these groups again this year to review and improve upon the opportunities they have identified.

You can also learn more about the Summit on NBDF's website!

A world without bleeding disorders begins with research, but we need to do this together.

National Research Blueprint

The inherited bleeding disorders community has seen significant advancements in care, thanks to new therapeutics and technologies, and improved diagnostics. Yet there are still important and persistent gaps in care today, particularly for those with rare disorders and underserved populations, such as women, girls, and people who have or had the potential to menstruate with bleeding disorders.

This is why the NBDF has led the development of a National Research Blueprint (NRB), an ambitious community-driven initiative to shape the future of research for bleeding disorders. The goal is to launch a research infrastructure that can markedly accelerate progress that matters to all persons affected by bleeding disorders and their families. In order to achieve this, the blueprint is intentionally designed to ensure the entire journey of transformational research is influenced by the experiences of people who live with bleeding disorders and their loved ones – recognized as lived experience experts (LEEs) – and is grounded in principles of health equity, diversity and inclusion (HEDI). 

The Bleeding Disorders Association of South Carolina was honored to be a part of the committee and working groups to helped to develop the National Research Blueprint.  Our Executive Director, Sue Martin, played a key roll in developing these guidelines on behalf of the Bleeding Disorders Association of South Carolina.  You can learn more about this initivitiative on the NBDF website.