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Webinar – Advocacy in rare disease: Crafting the public narrative

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Discover our webinars broadcasted by Science Magazine

The second webinar of the 2023 series will air on June 8 and will be available on demand for the following 2 days (free).

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Teaser of the webinar:

Advocacy in rare disease: Crafting the public narrative

Advocacy in rare disease is complex and challenging, but there are effective methods that advocates can use to communicate with the public. In this panel discussion, experts in communication, public relations, and influencing will discuss strategies and tactics to advance advocacy for rare disease. The discussion will explore how advocates can:

  • Raise awareness on how rare disease impacts individuals and families through social media, events, press releases, storytelling, and community engagement, and by targeting to local and national media outlets
  • Provide education to families, communities, schools, healthcare providers, policymakers, and the general public about rare disease diagnosis, symptoms, and treatment options
  • Build relationships with stakeholders such as government officials, biotech, healthcare professionals, patient organizations, and pharmaceutical companies that can help advocacy efforts
  • Lobby for policy change to improve access to health care, funding for research, access to treatments, and insurance coverage
  • Create patient advocacy groups that provide a powerful grassroots platform for advocating for rare diseases.

This webinar will last for approximately 60 minutes.



Mary Dunkle (National Organization for Rare Disorders, Quincy, MA)
Sparsh Shah (Musician, motivational speaker, philanthropist, and patient advocate, Iselin, NJ)
Anne Rancourt (National Institutes of Health, Bethesda, MD)
Erika Gebel Berg, Ph.D., moderator (Science/AAAS, Washington, DC)


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