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.

Team members:

  • Sickle cell specialist: specialists in sickle cell disease
  • Nurses: medical specialists in sickle cell disease.
  • Social workers: specialists who assist you with the issues of daily living, such as adjusting to living with sickle cell disease, and locating resources (e.g. insurance, transportation, housing).
  • Care coordinator: we know that it can be hard to get all of the care you need. This person will help you coordinate your appointments and medical tests.
  • Patients and families: these folks are an important member of the treatment team. The staff needs your input to develop a plan of care that will ensure your remain healthy, active, and able to live longer and stronger with sickle cell disease.

Other frequently asked questions

What is sickle cell disease?
sickle cell disease is the most common inherited clinical anemia in the United States and it brings along potentially debilitating and life-threating pathological conditions. It affects 100,000 Americans and many more millions world wide.
How can I help?
We always welcome donations and contributions, which you can make here. NASCC is a 501(c)(3) charity which makes your donations tax deductible.
Where can I find more information about sickle cell disease?
You can find more information about sickle cell disease at the American Society of Hematology and the sickle cell disease Association of America websites.
How can I stay informed about the National Alliance for Sickle Cell Centers and the progress it's making to help fight sickle cell disease?
You can sign up for our newsletter here. We also provide general information about sickle cell disease and related conditions.