This Rare Disease Day, Bionews is bringing together voices from across the rare disease community for a weeklong series of powerful conversations with Dr. Al and our incredible moderators.
Each day, we’ll explore the unique perspectives from patients, caregivers, and communities, highlighting the challenges, triumphs, and insights that come with living with rare diseases.
From practical strategies for deepening understanding to reflections on resilience and shared experiences, you won’t want to miss these sessions.
Check back beginning Feb. 24 to watch these rare conversations with patients, caregivers, and community members.
What would you like to ask Dr. Al?
On the final day of our “Keepin’ it Rare” series, we’re turning the spotlight to you — our rare community. If you could ask one question to a therapist specializing in rare diseases, what would it be?
This is your chance to seek guidance on the unique challenges of living with or supporting someone with a rare condition. Submit your questions and ones selected will be answered by Dr. Al on Rare Disease Day, Feb. 28.
About Dr. Al Freedman
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. As one of the world’s leading therapists specializing exclusively in the rare disease patient space, Dr. Al is uniquely equipped to support families navigating complex medical conditions and the professionals who serve them.
Inspired by his personal journey as the father of Jack, who lived with spinal muscular atrophy for 26 years, Dr. Al draws upon the invaluable lessons Jack taught him, alongside his professional training and early 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 community.

Dr. Al with his son, Jack, in 2020.
“Patients and families affected by rare disease
face so many complicated emotional challenges.
I feel honored to serve our rare disease community by sharing both my professional expertise as a psychologist and my lived experience as a father. We are all in this together.”
— Dr. Al Freedman
2024 HCU Conference Keynote Address, presented by Dr. Al Freedman
In his keynote address at the 2024 HCU Conference, Dr. Al reflects on resilience, hope, and the unique “rare gifts” that come with life’s challenges. Watch now to learn more about his journey and the profound insights he brings to the rare disease space.