Rochester, New York

Associate Professor, University of Rochester Medical Center

Representing: Researchers

Term Ends August 2024
Panel Co-Chair, Advisory Panel on Rare Disease

Heather Adams is an Associate Professor in the Department of Neurology at the University of Rochester Medical Center. She is a member of the University of Rochester Batten Center (URBC) and has previously served on the Medical Advisory Board (MAB) to the Batten Disease Support & Research Association, the major US advocacy group for individuals impacted by Batten disease. Dr. Adams’ research includes a focus on clinical endpoints, quality of life, and the everyday impacts experienced by individuals with rare, inherited metabolic and neurodegenerative disorders, their parents/caregivers, and siblings. Her research interests also include cognitive function in pediatric hypertension, HIV-associated neurocognitive disorders, and improved screening and diagnosis of Tourette syndrome and other tic disorders. Her clinical activities include neuropsychological assessment and evidence-based psychosocial interventions for children. Dr. Adams’ rare disease research has always been informed by the voice of patients and their parents and families. Since joining the URBC in 2003, she has actively engaged with the BDSRA as a researcher to develop studies, implement recruitment/engagement activities, and share research results with the BDSRA and its members. As a clinical child psychologist and pediatric neuropsychologist, she is committed to bringing forward each child’s voice, and hopes to apply her perspective and expertise in particular to the consideration of pediatric patient-centered outcomes research as a member of the PCORI Advisory Panel on Rare Disease.

Conflicts of Interest

As of September 2, 2021:

  • Neurogene, Consultant
  • Neurogene, Sponsored Research
  • Amicus, Consultant
  • Amicus, Sponsored Research
  • Beyond Batten Disease Foundation, Consultant
  • Theranexus, Consultant
  • Regenex Bio, Sponsored Research
  • Biogen, Advisory Board member, Compensated
  • Biogen, Sponsored Research
  • Batten Disease Support & Research Association, Sponsored Research, Principal Investigator, Uncompensated
  • Tourrette Association of America, Educational Grant, Principal Investigator, Uncompensated
  • National MPS Association, Faculty
  • National MPS Association, Delphi Panel Participant
  • National Institutes of Health, Sponsored Research, Co-Investigator
  • Critical Path Institute, Consultant
  • Up to Date, Royalty Payments for a Book Chapter
  • ISPOR, Task Force Member, Uncompensated
  • CURE Childhood Cancer Association, Board Member, Spouse


Person Type
Panel / Committee