In Rare We Care: Pediatric Rheumatic Disease Awareness & Management

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Juvenile idiopathic arthritis and lupus are the most common rheumatic diseases in children. However, more than 500,000 children develop other rheumatic diseases. The diagnosis, treatment, and management of these conditions often require a multidisciplinary approach owing to the diverse clinical manifestations that present in this patient population.

In light of Rare Disease Day 2022, we spoke with Emily von Scheven, MD, a pediatric rheumatologist at the University of California San Francisco Benioff Children’s Hospital and the executive committee chair of CARRA, and Vincent Del Gaizo, director of partnerships and patient engagement for CARRA and a parent of a pediatric patient with rheumatic disease.

Read the full transcript for this episode here.

Emily von Scheven, MD , is a board-certified pediatric rheumatologist with a special interest in the long-term outcomes of children with chronic illness. She cares for patients with all rheumatic conditions and directs the University of California San Francisco (UCSF) Child and Adolescent Comprehensive Lupus Program for Improved Health.

Dr von Scheven’s research focuses on understanding and improving the outcomes of children with rheumatic diseases, including outcomes during adulthood. She favors a life-course perspective, as many important adult outcomes have their origins in childhood.

Dr von Scheven uses epidemiologic and intervention clinical trials to better understand biologic and nonbiologic predictors of disease outcome and optimal therapeutic approaches. She works closely with patients and parents as partners to ensure that research is designed to address the questions most important to them.

At UCSF, Dr von Scheven serves as the chief of the Pediatric Rheumatology Division and the founding director of the UCSF Child and Adolescent Chronic Illness Center, whose mission is to create a lifetime of wellness for children growing up with chronic conditions. She mentors residents, fellows, and junior faculty both within and outside of the department and the institution.

Nationally, she serves as the president of the Childhood Arthritis and Rheumatology Research Alliance (CARRA). Locally, she is a member of the Northern California Arthritis Foundation Board and Medical & Scientific Committee. She is a recipient of the UCSF Health Exceptional Physician Award.

Vincent Del Gaizo , is the director of partnerships and patient engagement at CARRA and the father of a patient with a pediatric rheumatic disease. He served as the co-chair of Patient-Centered Outcomes Research Institute (PCORI)’s Rare Disease Advisory Panel as well as a member of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Advisory Committee. In his role at CARRA, Vincent educates and empowers families to become research partners. He connects patients and caregivers with researchers to design and conduct studies that fill knowledge gaps in pediatric rheumatology. He serves as a study team member providing the patient voice on numerous research projects. In addition, Vincent co-authored a patient engagement chapter for Rheumatic Disease Clinics.