C.V. Highlights for Susan Faitos, LMFT

Authorships and Publications

The XLH Network & Kyowa Kirin. (2026). XLH Community Guidebook.
The XLH Network & Kyowa Kirin. (2024–2025). Insights for change: Findings from the XLH Community Impact Survey.
Simmons, J., Stearns, B., Sharp, S., Butcher, L., Li, Z., Vincent, M., & Faitos, S. X-linked hypophosphatemia Community Impact Survey: Psychosocial health, symptoms, and self-care. Rapid poster publication. Vanderbilt University Medical Center, The XLH Network, and Kyowa Kirin. (2025)
Hamilton, A. A., Faitos, S., Jones, G., Kinsley, A., Naik Gupta, R., & Lewiecki, E. M. (2022). Whole body, whole life, whole Family: Patients’ perspectives on X-linked hypophosphatemia. Journal of the Endocrine Society.
The XLH Network. Voice of the Patient Report: Symposium on Hypophosphatemia. (2019)
Faitos, S. It’s Never Too Late to Find Your Community. Global Genes. Guest article reflecting on living with X-linked hypophosphatemia (XLH), overcoming stigma, and the life-changing importance of finding connection within the rare disease community. (2020, October 5).

Speaking Engagements

Building a Career in Rare Bone Disease: Engaging with Rare Disease Advocacy Organizations — Rare Bone Disease Alliance Reception at ENDO, Chicago, 2026
XLH with Susan Faitos & Kelly Rushing — The Rare Life podcast, Episode 37, 2023
Symposium on Hypophosphatemia: Externally-Led Patient Focused Drug Development Meeting Corresponding to the FDA’s Patient Focused Drug Development Initiative. Opening Remarks – Baltimore, MD, 2018
Conference Host and Presenter — XLH Day and XLH Network educational programs, 2018 - present
Featured Guest Speaker – Rare In Common podcast, Episode 26, 2020

Professional Development

Beyond The Diagnosis Training Series: Emotional, Social, and Systemic Challenges within the Rare Disease Community. Give an Hour
Strategic Finance for Nonprofit Leaders. Harvard Kennedy School, Harvard University, 2026
Exercising Leadership: Foundational Principles. Harvard Kennedy School, Harvard University, 2026
(Enrolled) Executive Leadership in Non-Profit Organizations; NYU Silver School of Social Work, Spring 2027
M.A Counseling Psychology, University of San Francisco, 1994
B.A. Social Work, Sacramento State University, 1992

Media

“Event Raises Awareness for World Rare Disease Day.” Santa Cruz Sentinel. Featured interview with Susan Faitos discussing her lived experience with X-linked Hypophosphatemia (XLH), the challenges of delayed diagnosis, and her leadership of The XLH Network Papp, A. (2020, February 27).

Licensure