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ASH Sickle Cell Disease Initiative

The ѻý (ASH) has launched a transformative, multi-faceted, patient-centric initiative to improve outcomes for individuals with the disease, both in the United States and globally, by bringing together stakeholders in the public and private sectors committed to significantly improving the state of SCD worldwide.

Listen to ASH's latest podcast series, Bringing Sickle Cell Disease to Life, and join ASH in the fight for Sickle Cell Disease survival, where you'll hear from leading experts, including researchers, physicians, and individuals living with the disease, exploring its past, present, and future.

Gene therapy

Gene Therapy and SCD

ASH recently sent a letter to the Centers for Medicare & Medicaid Innovation Center (CMMI) outlining important items for CMMI to consider in the development of the Cell & Gene Therapy Access Model (CGT Access Model) for Sickle Cell Disease (SCD). The letter outlines a comprehensive “wishlist” for treatment considerations that are crucial to this model.

The ASH Research Collaborative (ASH RC) was established by the ѻý (ASH) in 2018 to foster collaborative partnerships to accelerate progress in hematology, with the goal of improving the lives of people affected by blood diseases. ASH RC developed a centralized SCD clinical data platform, called the Data Hub, and a SCD Clinical Trials Network (SCD CTN).

In 2016, the Sickle Cell Disease Coalition (SCDC) was founded to help amplify the voice of the SCD stakeholder community, promote awareness, and improve outcomes for individuals with SCD. The SCDC’s growing membership of more than 100 groups include public health, research, and provider organizations; patient groups; federal agencies; industry representatives; and foundations. The SCDC is focused on coordinating efforts to produce the greatest impact for individuals with SCD.


ASH is committed to ensuring that individuals with SCD have access to high quality of care and is currently in the process of developing and implementing a multi-pronged strategy to expand health care professional education and training on SCD. Activities are aimed at four key audiences: hematologists, patients, hospitalists, and primary care clinicians. The Society has worked closely with the Emergency Department Sickle Cell Care Coalition to support their efforts to improve emergency care of individuals with SCD.

ASH published five new evidence-based clinical practice guidelines on the management of acute and chronic complications of SCD. Available guidelines include: Cardiopulmonary and Kidney Disease; Cerebrovascular Disease; Management of Acute and Chronic Pain; Stem Cell Transplantation; and Transfusion Support.  

The following resources were developed by ASH for those working to improve outcomes for persons with SCD.

Resources for Clinicians

From developing pocket guides and clinical guidelines to producing SCD-related webinars, ASH is committed to helping those who treat SCD patients provide quality care, continue their professional development, and enhance their knowledge and expertise.

Resources for Patients

An overview of sickle cell disease for patients, including an explanation of the difference between sickle cell trait and sickle cell anemia.

  • Informational Booklet on Hydroxyurea (English) (Spanish)
  • (This toolkit was developed in partnership with CDC)



To learn more about the Sickle Cell Disease Initiative, please contact Sickle Cell Disease Programs Manager Ramona Spencer at [email protected].

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