Patients are at the center of everything we do.

At the FNIH, we are driven by our passion to help patients live longer, healthier, lives – regardless of who they are, where they live and what disease they have. When we incorporate their perspectives into our work, the result will be faster medical breakthroughs for some of today’s more pressing health challenges.

The FNIH is committed to engaging patients and their families in the research process. We work closely with our Patient Ambassadors and Patient Engagement Council to ensure that the patient perspective is taken into account when designing clinical trials and other research initiatives.


Stories from our Patient Ambassadors

Sharon King
Batten Disease
Cynthia Chauhan
Heart Failure
Janet Church
Sjogren’s Disease
Carlos Larrauri
Eleni Tsigas
Preeclampsia Project

Patient Ambassadors Program

Patient Ambassadors provide input to the FNIH patient engagement plan, co-create a broader patient engagement platform and serve as patient spokespersons for the FNIH.

Patient Engagement Council

The FNIH Patient Engagement Council provides critical insights, guidance and advice on how the FNIH can achieve full integration of the patient, patient organizations and caregivers into the FNIH clinical research and non-clinical research. The advisory board is comprised of patient experts with a mix of leadership from patient centered organizations, along with patient thought leaders with appropriate representativeness in diversity of race, gender, and expertise.

Patient Engagement Council and FNIH staff members at the first annual Patient Summit, September 2023

Patient Engagement Council Members

  • Jean Campbell Principal at JF Campbell Consultants, LLC, Professional Patient Advocate in Life Sciences (PPALS)
  • Kristin Carman Director, Public and Patient Engagement, Patient-Centered Outcomes Research Institute (PCORI)
  • Ricki Fairley CEO, Touch, The Black Breast Cancer Alliance
  • Lisa Fitzpatrick MD, MPH, MPA Physician Founder, Grapevine Health
  • Loriana Hernández-Aldama Founder, Armor Up for Life, Emmy-Award Winning Journalist and Speaker
  • Theresa Mullin, PhD Associate Director for Strategic Initiatives, Center For Drug Evaluation And Research (CDER), U.S. Food & Drug Administration (FDA)
  • Joan Nagel, MD, MPH Medical Officer and Program Director, National Institutes of Health (NIH), National Center for Advancing Translational Sciences (NCATS)
  • Michele Oshman Vice President, External Affairs , Biotechnology Innovation Organization (BIO), Executive Director, Council of State Bioscience Associations (CSBA)
  • Jason Resendez CEO, National Alliance for Caregiving (NAC)
  • Randy Rutta CEO, National Health Council (NHC)
  • Kristin Schneeman Senior Director, Faster Cures
  • Alicia Staley Vice President of Patient Engagement, Medidata Solutions

Our Programs

Who We Are