Living with Uncertainty in Rare Disease:
Tools for Navigating Change and the Unknown
May 21, 2026 12-1pm EST
Join us for an honest conversation with Pyschologist and Rare Disease Advocate, Dr. Al Freedman about uncertainty in rare disease, and practical ways to feel more grounded for both patients and caregivers.
Why attend?
Managing needs and behaviors over time
Navigating routine disruptions
Supporting emotional regulation and uncertainty
You'll walk away with:
Rare disease comes with a kind of uncertainty most people never have to think about. Symptoms evolve. Plans get upended. "What ifs" pile up. And the emotional weight of not having clear answers can be exhausting, for patients and caregivers alike. It's one of the most overlooked parts of rare disease, and it's exactly what this webinar is about.
Register below:
Dr. Al Freedman
Pyschologist and Rare Disease Advocate
Albert Freedman, PhD, is a psychologist, educator, and rare disease advocate with more than three decades of experience working with individuals and families affected by rare diseases and disabilities.
Dr. Freedman 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 to provide counseling and consultation. He works with families, advocacy organizations, pharmaceutical companies, and healthcare organizations to create meaningful support systems and impactful change within the rare disease and disability communities.
Download Folia and gain control today.
Use invite code “DR-AL” when you sign up.
