Who are we?
We are an organization that was formed to provide a foundation to support sickle cell centers in our mission to improve the care of individuals with sickle cell disease (SCD). Our goal is to unify sickle cell centers with our purpose and provide support and infrastructure assistance to increase the number of sickle cell centers available. Our mission statement:
to support sickle cell disease centers in providing high-quality comprehensive care by setting standards of care and promoting their adoption, identifying opportunities and resources to strengthen sickle cell disease centers, and advocating for access to comprehensive care to improve health outcomes, quality of life, and survival.
Through NASCC we are creating the infrastructure to define a sickle cell center for adults and children and to enhance and promote the adoption of standards of care that improve patient outcomes and quality of life. This includes developing and sharing resources amongst our member centers so they can have access to as much high quality information as possible. We also plan to continuously assess outcomes and improve protocols through the Globin Research Network for Data and Discovery (GRNDaD) registry.
We want to support providers who care for individuals with sickle cell disease, giving them the resources and support they need. Together, we can advocate for the ethical and equal treatment of individuals living with sickle cell disease.
Our end goal is to make sure that everyone with sickle cell disease has access to a sickle cell specialist to improve their quality of care and quality of life.
What does being a NASCC-recognized comprehensive Sickle Cell Center mean?
NASCC recognized Comprehensive Sickle Cell Centers are dedicated to improving the outcomes and well-being of people living with sickle cell disease. Your NASCC comprehensive Sickle Cell Center will offer BOTH up to date, quality medical care and have an experienced, caring staff that takes time to develop comprehensive treatment care plans for patients and families. A NASCC center also has the ability to prescribe all of the available disease-modifying therapies for sickle cell disease.
Some centers may also have access to research trials - make sure you talk to your doctor if you are interested in those trials.
Who is part of a NASCC comprehensive Sickle Cell Center?
Your NASCC comprehensive SCD Center team may include a sickle cell specialist, dedicated and trained nursing staff, a social worker, and someone to help coordinate your care (this could be a nurse, social worker, patient navigator or community health worker), among others. Your SCD Center can also help you access a primary care physician, an OBGYN, an eye doctor, a psychiatrist or psychologist, or other specialty physicians.