Vision, Mission, and Objectives

A strong and united sickle cell and other inherited blood disorders patient and health care provider communities equipped to effectively advance disease-specific and cross-disease priorities that improve outcomes for affected families

Through data-driven advocacy, collaboration, and capacity building, we empower our member organizations and advance cross-disease initiatives to improve outcomes for people living with sickle cell & other inherited blood disorders.


  • Advance disease-specific and cross-disease initiatives that meet the immediate needs of people living with sickle cell disease & other inherited blood disorders
  • Equip inherited blood disorder patient organizations to shape and advance efforts that ensure the promise of new innovations can be fully realized for all.
  • Act as a medium for capacity building, training, and mentorship, and for translating knowledge and materials, compiling and disseminating information
  • Strengthen and empower sickle cell & other inherited blood patient organizations through the creation of regional networks, especially in areas of the highest unmet needs
  • Support cross-disease patient-centered education initiatives to strengthen care infrastructure, improve training/education of HCPs, and expand HCP access to resources
  •  Encourage the formation and development of national and regional Inherited blood disorder organizations throughout the world, and assist and stimulate such organizations through disease-specific and cross-disease exchange of skills and knowledge.
  • Enable advancement of shared priorities within the inherited blood disorders community through unified and coordinated data-driven advocacy