ABOUT US
Sickle Cell Disease (SCD) and related conditions impact more than 100,000 people living in the United States. It is an inherited condition that impacts the structure of red blood cells that carry oxygen to organs in the body and SCD and related conditions can cause a range of symptoms from pain to organ damage to death.
The Hemoglobinopathies National Coordinating Center (HNCC) is a national resource for resources and information on SCD and related conditions to support researchers, healthcare providers, and community-based organizations increasing access to quality care.
The Hemoglobinopathies National Coordinating Center (HNCC) is a national resource for resources and information on SCD and related conditions to support researchers, healthcare providers, and community-based organizations increasing access to quality care.
The aims of the HNCC are to—
- Educate individuals with SCD, families, and clinicians to improve knowledge and capacities
- Link individuals and families to evidence-based care
- Foster partnerships between clinicians, community organizations, and other stakeholders to improve the ability to deliver coordinated, comprehensive care across all individual’s with SCD lifespan.
Through the HNCC, our aim is to grow a stronger structure of SCD care by connecting SCD specialists, primary care, community health workers, and community-based organizations to improve the quality of life for individuals with SCD and related conditions. When we all work together, we build a better system of care.
PARTNERS
For more information about our partnerships click below.
RESOURCES
SCD is a complex set of conditions. The HNCC compiles past SCD learnings for patients, caregivers, community organizers, and medical staff seeking resources on the condition.
These partner resources are compiled to help answer or address questions around SCD care and treatment. They are NOT designed to provide medical diagnosis around treatment or care. Please connect with a healthcare professional for treatment and care options.
COMMUNITY
The HNCC is committed to expanding the community of shared SCD learnings to help medical professionals and community organizers stay abreast of emerging trends and resources.
Early entry into evidence-based SCD care is demonstrated to improve health outcomes, yet many people with SCD do not have access to high quality care.
TRAINING
Expanding access to SCD treatment and care is a part of the mission of the HNCC.
The HNCC will offer training as funding permits. Our trainings will help to ensure patients today, tomorrow, and in the future have a coordinated, multi-disciplinary care path from infancy to adulthood.
DATA AND SCIENCE
Advancing SCD Treatment with Evidence-Based Care
According to the Centers for Disease Control and Prevention, Sickle Cell Disease (SCD) is a group of inherited red blood cell disorders that is present from birth. It affects approximately 100,000 people in the US. SCD is a serious condition that can be treated but currently is not curable, making access to high quality care especially important. SCD causes pain and other problems, such as infection, lung-related complications, and stroke.
