For NICHQ’s current and future work, I am motivated by wanting to be a better version of myself in service of others. Wondering whether my own implicit biases impacted my care of patients and families, I realize that I cannot redo past ER experiences. If I could go back, I would slow down to acknowledge and try to set my biases aside and approach patients from a personally more informed perspective. But now, I can use my past, present, and future experiences to ensure NICHQ is amplifying important lessons from this multi-year effort reflecting the compassion, care, and commitment of hundreds of dedicated professionals in pursuit of equitable, accessible, and quality healthcare for people living with sickle cell disease.

As NICHQ's Associate Director of Programs and Project Director for the Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program and Content Development for Newborn Screening Clearinghouse initiatives, Kim Sprunk shares key takeaways and findings from the projects and their importance to NICHQ's overall programming goals.

People who have sickle cell disease and very vulnerable to COVID-19 impact. As we enter the fourth month of the pandemic in the U.S., we’re sharing how  providers and advocates have remained nimble to ensure that comprehensive and consistent care is maintained throughout the pandemic and beyond.

Precious Lee has spent her lifetime navigating the health system, first as a patient with SCD and then, after her son Melvin was born with SCD, as a mother. She has lived with the impact of SCD, witnessed significant advancements in care, and intimately knows the barriers families still face. Here, she describes those challenges and elaborates on opportunities for continued improvement.

Between 25 and 30 million Americans, many of them children, are living with a rare disease. The complex challenges facing these children and families deserve innovative responses. Here, NICHQ President and CEO Scott D. Berns, MD, MPH, shares his experiences, elaborates on successful strategies, and describes his goals for the future.

Advancements in care have helped more children with rare diseases reach adulthood, but health systems and providers have struggled to help children transition to adult care, resulting in high rates of complications and mortality for young adults. These strategies for helping young adults with sickle cell disease transition to adult care can save lives.