Rare Resilience is the groundbreaking new podcast from psychologist, rare disease community member, and mental health expert, Dr. Al Freedman. The psychological burden of rare diseases on patients, families, and caregivers, can be overwhelming. Rare Resilience amplifies authentic voices, builds community, and reduces the stigma associated with being a member of this extraordinary community.
Albert Freedman, PhD, is a psychologist, educator, and rare disease advocate with more than two decades of experience supporting individuals and families affected by rare disease and disability. As one of the world’s leading psychologists specializing exclusively in the needs of patients and families affected by rare disease, he brings a depth of insight that advocacy organizations, biopharmaceutical companies, and the agencies serving them rely on to better understand the patients and families at the center of their work.
Dr. Freedman’s perspective is shaped by both professional training and lived experience. His son, Jack, lived with spinal muscular atrophy for 26 years, and the lessons of that journey inform every family he counsels and every organization he advises. Dr. Freedman’s work spans family counseling, facilitation of rare disease support groups, advisory engagements on patient-centered strategy, training for patient-facing teams, and international public speaking. Whether the audience is a single family or a global organization, his focus is the same: making a difference in the lives of patients and families affected by rare disease.
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