Town Halls & Open Discussions

We are Minnesota's only not-for-profit community-based organization solely dedicated to individuals living with SCD. Our Executive Board and advisory committees are comprised of a diverse group of patients, caregivers, medical providers, and concerned members of the community. All of whom are passionate about the health outcomes and quality of life of those living with this disease.------------------------------------------------Sickle Cell Disease (SCD) is the most common genetic blood disorder in the world and affects millions of people. SCD is particularly common amongst those whose ancestors came from sub-Saharan Africa; Spanish-speaking regions in the Western Hemisphere (South America, the Caribbean, and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy.Sickle Cell Disease is a lifelong condition that causes extreme pain and other life threatening complications such as stroke, cardio-pulmonary disease, leg ulcers, blood clots, kidney disease, and other health conditions. Although bone marrow (stem cell) transplant is a cure for some, it is not a universal cure for all.In the U.S. SCD affects an estimated 100,000 individuals, that's an astounding one in 365 babies of African/African-American descent born in America with this complex disease. In addition to the 30 - 40 babies diagnosed each year through Minnesota's newborn screening program, there are hundreds more children and adults who continue to live in the shadows of Minnesota's health care systems.Although sickle cell disease and sickle cell trait impacts people from all over the world, in the U.S., the vast majority of those affected are people of color. This population is regularly faced with stigmatization and barriers to health care because of their frequent need for treatment of extreme pain. We are working to break down these barriers and improve the health and quality of life of people living with sickle cell in our community.