Al Freedman, PhD, Rare Disease Psychologist and Rare Dad, discusses how industry partners can support the mental health of rare disease communities.
Dr. Freedman provides individual counseling, support group facilitation, and advises rare disease advocacy organizations and industry partners on mental health needs. His presentation at this year’s World Orphan Drug Congress (WODC 2025) focused on how industry partners can support the mental health of rare disease communities.
Unique Challenges in the Rare Disease Community
Some of the unique mental health challenges that rare disease families face include the trauma of diagnosis and adjusting to life-changing news, navigating a new life of anxiety-inducing uncertainty, and how to find hope and strength in their community. Scientific progress can also contribute to the mental health of those in the rare disease community. The addition of newborn screening and new treatment options bring hope to patients and families. However, progress can also present new challenges such as ethical issues, access to treatment, and funding. Despite these challenges, Dr. Freedman has repeatedly observed the ability of rare disease patients to be more resilient, creative, and have a better perspective than persons without rare conditions.
How Industry Partners Can Support
Because the priorities of industry partners and rare disease community members often differ, Dr. Freedman stresses the importance of finding the intersection of those priorities and investing in a mutually beneficial partnership. Industry partners that do the best in these communities are those that get to know patients and families, listen to their needs, and respond with actions that address those needs. Earning trust and listening are the top ways for industry partners to support the mental health of this community, along with initiating sponsored programs such as workshops, support groups, and peer support.
For more information on how to support mental health in the rare disease community, visit https://www.rarecounseling.com/
To learn more about rare diseases, visit https://checkrare.com/
