SCD is the most commonly inherited blood disorder affecting approximately 90,000 Americans and 1 out of 500 African-Americans 2. SCD is caused by a genetic mutation in hemoglobin, which predisposes red blood cells to become rigid and misshapen, "sickle"-shaped. SCD is a lifelong condition complicated by acute and chronic medical problems, which can be life-threatening and disabling. Common complications include episodic severe pain, chronic hemolytic anemia, increased vulnerability to infection and multi-organ damage 3. SCD adversely impacts the physical, emotional, social, and vocational lives of both the affected individuals and their families across the lifespan.
STORM is a regional sickle cell disease (SCD) network that brings together SCD clinics, community-based organizations, patients, families, and stakeholders across the Midwest to improve access to high-quality, evidence-based care, expand provider education, and improve health and quality of life outcomes for people living with SCD in the Midwest.
Our Mission is to improve the quality of life and health outcomes for all Midwesterners with sickle cell disease.
Our Goals are to leverage a sustainable, synergistic network to expand access to care, improve the quality of care, and track quality of life indicators.