Fondation Ipsen

Webinar – Advocacy in rare disease: Working the Regulatory Angle

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Discover our webinars broadcasted by Science Magazine

The fourth webinar of the 2023 series aired August 31st and is available on demand. 

Register and watch 

About the webinar

Across the globe, regulatory landscapes are notoriously complex and difficult to navigate, yet laws regarding human health can literally be a matter of life and death. Diagnosis and treatment remain challenging for the more than 7,000 rare diseases impacting 350 million people worldwide. Policy makers set research funding agendas and make laws, such as the Orphan Drug Act, that can tip the balance on whether drug makers will pursue treatments for rare disease and make them accessible. Advocates play a critical role, getting the attention of lawmakers and making the case that regulations shape healthcare outcomes for people with rare disease.

In this webinar, policy experts, advocates, and political insiders will discuss:

  • How to unravel the complexities of regulatory processes surrounding rare disease
  • Strategies for getting access to lawmakers and what to say to make an impact
  • Success stories about advocates who influenced policy, research funding, and access to treatments.

This webinar will last for approximately 60 minutes.



Karin Hoelzer, D.V.M., Ph.D. (National Organization for Rare Disorders, Washington, DC)
Julia Jenkins (EveryLife Foundation, Washington, DC)
Stuart Portman, M.P.H. (U.S. Senate Committee on Finance, Washington, DC)
Simone Boselli (Eurordis, Brussels, Belgium)
Erika Gebel Berg, Ph.D. ((Science/AAAS, Washington, DC)
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