Consuela A. Albright: Clinical Advocacy in Sickle Cell Disease
Consuela A. Albright, Nurse Practitioner at Cleveland Clinic, shared a post on LinkedIn:
“Advocacy isn’t only the work of patient organizations, it’s also the responsibility of the clinical and research community.
The American Society of Hematology (ASH) is the world’s largest professional society for blood disorder specialists, and sickle cell disease has long been a core focus of its advocacy arm.
ASH advocates for sustained NIH and NHLBI research funding, supports policies that expand access to emerging treatments and curative therapies, and works to build a hematology workforce that reflects the communities most affected by SCD.
As a clinician, I feel this aspect of advocacy most directly: the responsibility to translate bedside experience into policy input and to ensure the people setting research priorities hear from those providing day to day care.
Advocacy from the clinical side doesn’t replace patient led advocacy it should amplify it.”
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