Sumira Riaz | Director Patient Engagement
Unboxed Psychology

Day 1 - World Orphan Drug Congress USA 2026 @ 13:00

Pitch 3: Unboxed Psychology

Day 1 - World Orphan Drug Congress USA 2026 @ 15:30

Integrating Mental Health into Rare Disease Programs: What Industry Can Do and Where to Start

Mental health is a critical—but often underdeveloped—component of rare disease care, despite growing recognition of its impact on patients, caregivers, and clinical trial participation. This panel brings together psychologists and patient advocates to help industry leaders understand why mental health must be integrated into rare disease programs and how to do so in a practical, phased way. Through real-world examples, speakers will outline where industry can start, how to prioritize investments, and how to design mental health support that is meaningful, scalable, and aligned with patient needs across programs and clinical trials.  

Objectives:  

• Understand the mental health challenges uniquely faced by rare disease patients and caregivers—and why they directly affect outcomes, engagement, and trust  
• Learn a phased approach to incorporating mental health into rare disease organizations and clinical trial programs (from early awareness to scaled support)  
• Identify practical, patient-informed actions industry can take when mental health is budgeted for but lacks a clear implementation plan  
• Gain insight into how psychologists and patient advocates define meaningful mental health support—and how industry can avoid common missteps  

Moderator: Albert Freedman, Counseling Psychologist / Rare Dad, Rarecounseling.com

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Albert Freedman / Integrating Mental Health into Rare Disease Programs: What Industry Can Do and Where to Start

Albert Freedman, Counseling Psychologist / Rare Dad,
Rarecounseling.com

Al Freedman, PhD, is a psychologist, educator, and rare disease advocate with more than two decades of experience working with individuals and families affected by rare diseases and disabilities.  Dr. Al is inspired by his personal journey as the father of Jack, who lived with spinal muscular...

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Frank Rivera, President, Stronger Than Sarcoidosis

Sumira Riaz, Director Patient Engagement, Unboxed Psychology

Jo Kaur, Founder, Riaan Research Initiative

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Jo Kaur / Integrating Mental Health into Rare Disease Programs: What Industry Can Do and Where to Start

Jo Kaur, Founder,
Riaan Research Initiative

Jo Kaur is a civil rights attorney turned drug developer. Jo’s story is a mother’s fierce fight to prolong her son Riaan’s life and to build treatments for Cockayne syndrome, a fatal genetic disorder that causes profound neuronal loss and early childhood death. Riaan was diagnosed with Cockayne...

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