Albert Freedman, PhD, is a psychologist in independent practice, serving clients and families in over 40 states in the USA. Dr. Freedman specializes in supporting patients and families affected by rare diseases, disabilities, and medically complex conditions. He serves as a consulting psychologist to rare disease advocacy organizations and biopharmaceutical companies and speaks globally on the topics of mental health, rare disease and complex medical conditions. Al's son, Jack, lived with Spinal Muscular Atrophy (SMA) for 26 years.
My Areas of Expertise
The Unique Mental Health Needs of Individuals and Families Affected by Rare Disease & Disability
The emotional journeys of individuals and families affected by a rare disease are complicated and multi-faceted. Few resources are available through our health care systems. How are our families similar and how are they different from families unaffected by rare disease? What do our families need to not only survive but thrive?
The Evolving Needs of Rare Disease Advocacy Organizations and Communities
Gene therapies and other treatments are bringing great hope, but also some unanticipated and complex challenges to rare disease communities. How can rare disease advocacy organizations and industry partners together navigate the complex territory that comes with clinical trials and managed access programs? How can our rare disease advocacy organizations keep their communities together as one when some patients have access to life-altering treatments and some do not?
The Role of Industry in Supporting the Emotional Experience of Individuals and Families Affected by Rare Disease & Disability
Industry plays a multifaceted role in patient families’ lives. It’s in everyone’s best interest to support the mental wellbeing of rare disease families to ensure they maintain connected to the community, are aware of existing treatment options, and find support they can count on.
Family Support Programming Development and Implementation
Mental health and psychosocial support is essential for individuals and families affected by rare disease, disability and medical complexity. From the traumatic period of diagnosis to navigating the many ongoing challenges associated with rare disease, I can help. I’ve been a part of the development and implementation of psychosocial family support programs for rare disease advocacy organizations. I understand the needs of these families and the most effective ways to provide opportunities to support their unique needs.