Danielle Boyce, MPH, DPA
Executive Director, Robert Packard Center for ALS Research and Answer ALS Research Program
Assistant Professor, Neurology
Representing: Patients, Caregivers, and Patient Advocates
Term Ends: August 2023
Danielle Boyce is an award-winning rare disease advocate, researcher, public speaker, and writer. Her work has appeared in dozens of scientific journals and her children’s book, Charlie’s Teacher, is used in children’s hospitals throughout the country. She has served on several patient and caregiver advisory panels for academic institutions, pharmaceutical companies, nonprofits, the Food and Drug Administration, the American Academy of Pediatrics, and PCORI. Boyce currently works for the Robert Packard Center for ALS Research at Johns Hopkins and advises rare disease organizations on data science-related matters. She holds a master’s in public health with a concentration in epidemiology and a doctorate in public administration.
After representing the caregiver voice on a PCORI-funded study, Boyce realized that serving on a PCORI advisory panel is the perfect marriage of her research and advocacy skills and is excited to serve patients through her continued involvement with PCORI. She lives outside of Philadelphia with her husband, Jim, and their four children.
Highlighting the Work and Importance of PCORI's Advisory Panel on Rare Disease
Danielle Boyce describes some of the work of the panel and why it is important in helping PCORI fulfill its mission to help patients and their families make better-informed healthcare decisions.
Conflicts of Interest
As of August 21, 2020
- National Organization for Rare Disorders, Employer
- Johns Hopkins University, Employer
- COPD Foundation, Consultant
- Greenwich Biosciences, Consultant
- Gould Syndrome Foundation, Advisory Council Member
- Advisory Panel Member
- Advisory Panel on Rare Disease