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Dr. Titilope Fasipe shares how her personal experience with SCD led her to become a pediatric hematologist, the importance of including warriors in care plans and practices, and what advocacy work she believes still needs to be done to advance SCD research and treatment.
Madeline D’Onfro, MPH, a Senior Project Manager for NICHQ’s Community-Centered Hospital Initiative (CCHI), Hemoglobinopathies National Coordinating Center (HNCC), United HealthCare Catalyst Initiative: Infant Health Equity, and CDC Foundation Respectful Maternal Care Resources for Perinatal Quality Collaboratives, shares her professional goals and career journey thus far.
Kirsten Klatka, MSW, an associate project director for NICHQ’s Family Engagement and Leadership in Systems of Care (FELSC) and Hemoglobinopathies National Coordinating Center (HNCC), shares her professional goals and career journey thus far.
Strategies for providers to improve the experience of care for young people living with SCD and enhance the process of transition from pediatric to adult care include educating pediatric patients early about the process of transitioning to adult care, streamlining systems for sharing medical records, and considering bias when making pain management recommendations. Learn more about each strategy, and read insights from Mikeia Green, a fourth-year medical student at UC Davis, who has successfully transitioned from pediatric to adult SCD care.
In the past several decades, clinicians, public health professionals, and those with lived experience have seen advancements in Sickle Cell Disease (SCD) treatments and research that have significantly improved outcomes and increased life expectancies for people living with SCD. For example, the FDA-approved medication hydroxyurea (HU) has been recommended as a SCD standard of care…
Full name and title: Kim Sprunck, MSW, MPH, Associate Director of Programs Years with NICHQ: 3 How has your background/experiences led you to join a national children’s health organization? “I have a long history of being interested in public health, and specifically population health. Specifically, I have a background in improving health for vulnerable populations- including helping low-income populations who need…
Right now, close to 100,000 people in the United States, many of whom are children, spend days experiencing acute pain, dealing with costly and uncomfortable hospitalizations, and fighting off infections – all common side effects associated with sickle cell disease (SCD). Thanks to innovative advancements in care and treatment, most people living with SCD now…
When Precious Lee was a year old, she began to experience severe pain in one of her arms. Her mother, Tammy, knew something was wrong—Precious had stopped eating and wasn’t moving her arm at all—but the doctors at their local hospital didn’t share her concern. “My mom brought me to the hospital multiple times, but…
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. NICHQ President and CEO Scott D. Berns, MD, MPH, FAAP, understands this need, perhaps better than anyone. His connection to the rare disease community is both…
Until recently, sickle cell disease (SCD)—the most common inherited blood disorder in the United States—was primarily considered a pediatric disease, with most children not surviving into adulthood. That’s changed over the last two decades, thanks to innovative advancements in care and treatment. But even as these advancements have helped more children reach adulthood, health systems…