Mental Health in Rare Disease

Life with a rare disease can have infinite milestones, setbacks, traumas and triumphs—all likely to be interlaced with a variety of factors that can influence mental health and quality of life.In fact, according to Dr. Raymond A. Huml in the February 2020 Journal for Clinical Studies, psychological symptoms are estimated to affect 75% of rare disease patients. Whether the cause is from the physical disease or dynamics surrounding it, it is time to remove the stigma around talking about mental health, understand the unique challenges of this community, and drive support and solutions to address them. In advance of Rare Disease Day 2022, Keri McDonough, VP, Head of the Patient Voice Consortium and Michelle Bailey, MD, Senior Medical Director at Syneos Health, sit down with host Jeff Stewart to discuss the impact of mental health on the rare disease community.To find the resources discussed on the podcast:Our OdysseyNew York Times: I’m Haunted by Sisters With Sickle Cell: Two Thrived. Two SufferedRare Disease Day 2022: Collaborating to Make Mental Health in Rare Disease Stigma-Free  For more on the topics covered in this episode, be sure to check out:Innovation Perspectives in Rare Disease Drug DevelopmentThe Syneos Health Pocast: Navigating the Rare Disease LandscapeRare Disease Drug Development: Clinical, Scientific, Patient, and Caregiver PerspectivesIf you want access to more future-focused, actionable insights to help biopharmaceutical companies better execute and succeed in a constantly evolving environment, visit the Syneos Health Insights Hub. The perspectives you’ll find there are driven by dynamic research and crafted by subject matter experts focused on real answers to help guide decision making and investment. You can find it all at insightshub.health. Like what you’re hearing?  Be sure to rate and review us!  We want to hear from you!  If there’s a topic you’d like us to cover on a future episode, contact us at [email protected] views expressed in this podcast belong solely to the speakers and do not represent those of their organization.  If you want access to more future-focused, actionable insights to help biopharmaceutical companies better execute and succeed in a constantly evolving environment, visit the Syneos Health Insights Hub. The perspectives you’ll find there are driven by dynamic research and crafted by subject matter experts focused on real answers to help guide decision-making and investment. You can find it all at https://www.syneoshealth.com/insights-hub. Like what you’re hearing? Be sure to rate and review us!  We want to hear from you! If there’s a topic you’d like us to cover on a future episode, contact us at [email protected].