Fondation Ipsen

Webinar – Blooming against odds: Successfully navigating mental health in rare disease

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Discover our webinars broadcasted by Science Magazine

The first webinar of the 2024 series aired June 13th and is available on demand. 

Register and watch 

About the webinar

Living with a rare disease can be an isolating experience, with impacts on both physical and mental well-being. Yet, the global community of those affected is vast, numbering over 400 million. This webinar aims to shed light on the unique challenges faced by individuals living with rare diseases and provide insights into evidence-based strategies for maintaining mental health resilience in the face of adversity.

The panelists include individuals with rare disease who have faced their own mental health struggles as well as scientists and policy experts who focus on mental health in the context of rare disease. Attendees will gain valuable knowledge on how the health care industry impacts patient mental health, ways to access mental health resources, and strategies for navigating the emotional and psychological aspects of living with a rare disease. The discussion aims to empower individuals with rare diseases to not only survive but thrive in their journey towards mental health and well-being.

Webinar attendees will:

  • Understand the psychological impact of living with a rare disease
  • Explore evidence-based coping mechanisms and resilience-building strategies
  • Learn how to promote advocacy for mental health resources in rare disease and build community support

This webinar will last for approximately 60 minutes.



Kathleen Bogart (Oregon State University, Corvallis, OR)

Tanita Allen (Advocate and author, Cleveland, OH)

Juliet Lyons (Recording artist, Los Angeles, CA)

Matt Bolz-Johnson (EURORDIS, Paris, France)

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