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 atrophy (SMA) for 26 years as well as his professional training and experience as an educator to provide counseling and consultation. He works with families, advocacy organizations, pharmaceutical companies, healthcare organizations, and schools to create meaningful support systems and impactful change within the rare disease and disability communities.
Appearances:
Pre-Conference Day - World Orphan Drug Congress USA 2026 @ 14:00
Supporting the Mental Health Needs of Rare Disease Communities: Programs That Work
Patients, families and communities affected by rare disease experience significant mental health challenges. Over the past decade, many rare communities, supported by industry partners, have expanded their support programming to include mental health needs. This workshop will focus on the unique mental health needs of rare communities and will provide examples of practical support programs designed to meet these needs.
Objectives:
- To describe the unique mental health challenges of rare patients, families and communities.
- To discuss the role industry partners play in supporting the emotional health of rare communities.
- To provide concrete examples of programs focused on supporting the mental health needs of rare communities.
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
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