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 attention and demand 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.

North Carolina is developing a system that connects individuals with resources to address social, economic and environmental barriers to their health—such as housing, food insecurity, and transportation. By putting funding and policy efforts into addressing social determinants of health, North Carolina is building a system that can improve health outcomes for children and families across the state.

In honor or our 20th anniversary, we're sharing insights, memories and goals from the NICHQ team. Here, NICHQ Project Specialist Colleen Bernard shares her proudest moment during her time at NICHQ and her goals for NICHQ's future. 

In honor of National Breastfeeding Month, we’ve taken time with NICHQ Faculty Expert, Lori Feldman-Winter, MD, MPH, an internationally and nationally recognized expert on breastfeeding nutrition, education and policy, to recognize successes and learn about opportunities for improvement. Her frank description of bias and her passion for promoting gender-equitable social norms have inspired us to continue pursuing sustainable improvements. 

Hospitals on a national initiative to improve safe sleep came together to share successes and lessons-learned. Here, find their highest-rated strategies and change ideas, all of which reflect early successes in their work. Hospitals seeking to improve safe sleep education can refer to this list as a place to start and guide for gaining quick wins.

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.