Activating Advocacy for Kids, Teens and Youth: 2023 RARE Advocacy Summit Session

October 27, 2023

As part of the Empowering the RARE Individual track from the 2023 RARE Advocacy Summit, this panel, Activating Advocacy for Kids, Teens and Youth, is for young advocates or those looking to inspire young advocates looking to be more involved in rare disease advocacy. This discussion centers on the value of engaging young people and offers tips on how to host a Hill Day or instill programming for a younger demographic.

Lindsey Cundiff
Associate Director of Patient Engagement, EveryLife Foundation for Rare Diseases

• Jenna Heilman
Executive Director, Huntington’s Disease Youth Organization (HDYO)

• Lisa Facciolla
Community Engagement Specialist, US Hereditary Angioedema Association

• Sati Cooper-McCann
Young Advocate

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