le 9 février 2022

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 Odyssey

New York Times: I’m Haunted by Sisters With Sickle Cell: Two Thrived. Two Suffered

Rare 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 Development

The Syneos Health Pocast: Cheminer dans l’univers des maladies rares

Rare Disease Drug Development: Clinical, Scientific, Patient, and Caregiver Perspectives

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