Vision:
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
Mission:
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.
Objectives:
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- Advance disease-specific and cross-disease initiatives that meet the immediate needs of people living with sickle cell disease & other inherited blood disorders
- Equip clinicians and patient organizations serving the inherited blood disorders community to shape and advance efforts that ensure the promise of innovations can be fully realized for all.
- Strengthen and empower clinicians and patient organizations serving the sickle cell & other inherited blood disorders community through the creation of regional networks, especially in areas of the highest unmet needs
- Act as a medium for capacity building, training, and mentorship, and for translating knowledge and materials, compiling and disseminating information
- 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 globally. 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 efforts.