Fondation Ipsen

Webinar – Advocacy in rare disease: Taking Care of Caregivers

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Discover our webinars broadcasted by Science Magazine

The fourth webinar of the 2023 series aired October 11th and is available on demand. 

Register and watch 

About the webinar

The Covid-19 pandemic brought into focus for many the enormous stress and sacrifice experienced by caregivers. Those caring for individuals with rare diseases have long faced challenges, from navigating complex medical systems to providing emotional support for their loved ones. Many caregivers also feel the need to act as advocates for their loved ones, working with governments, patient groups, and other stakeholders to try to improve the lives of those under their care. Too often, the plight of the caregiver themself is overlooked, but advocates are working to make change. In this panel discussion, we will explore advocacy efforts aimed at easing the burden of caregiving for rare diseases.


In this webinar, participants will learn about:

  • The unique challenges caregivers of people with rare diseases face,
  • Caregiver advocacy action from outside the rare disease space, and
  • Success stories about advocacy efforts that are easing the burden of caregiving in rare diseases.

This webinar will last for approximately 60 minutes.



Maria Della Rocca (Global Genes, Washington, DC)
Amy Jayne McKnight (Queen’s University Belfast, Northern Ireland)
Catherine Alicia Georges (Lehman College, Bronx, New York)
Parvathy Krishnan (Krishnan Family Foundation, Cary, North Carolina) 
Erika Gebel Berg, Ph.D. (Science/AAAS, Washington, DC)
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