Fondation Ipsen

Webinar – Standing out in the storm: Caregiving in rare disease

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Discover our webinars broadcasted by Science Magazine

The second webinar of the 2024 series aired July 18th and is available on demand. 

Register and watch 

About the webinar

Whoever came up with the expression “Not all heroes wear capes” probably had a caregiver in mind. Caring for someone with a rare disease comes with a maelstrom of challenges, often requiring a multifaceted approach that addresses medical, emotional, and practical needs. This webinar aims to provide caregivers with valuable knowledge and strategies to navigate the complexities of caregiving in the context of rare diseases, empowering them to provide effective support while maintaining their own well-being.

The panel will bring together caregivers, scientists, and policy experts who will share insights and practical advice based on both research and personal victories. Attendees will gain a deeper understanding of the challenges faced by caregivers and learn practical strategies to enhance their caregiving skills and resilience.

In this webinar, participants will:

  • Explore the unique challenges of caregiving in rare disease
  • Learn practical caregiving strategies and how to access resources
  • Hear about approaches that work to foster resilience and self-care among caregivers.

This webinar will last for approximately 60 minutes.



Danielle Rice (McMaster University, Hamilton, Ontario)

Saundra Gumerove (Attorney, Jericho, New York)

Richard E. Poulin II (Teach RARE, Bangkok, Thailand)


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