From Awareness to Action: Advocacy That Makes a Difference
Автор: Phelan-McDermid Syndrome Foundation
Загружено: 2025-05-08
Просмотров: 73
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Get ready to be inspired by impactful voices in advocacy!
Join Dr. Lauren as she sits down with Katie Collins, Samantha von Felden, and Mark Vieth — three passionate advocates working on the front lines in Washington, D.C., fighting for the rights of individuals with rare diseases.
In this episode, they share their insights, stories, and strategies for creating change where it matters most. Whether you're new to advocacy or you know a thing or two, their expertise is a true resource to all of us in the Phelan-McDermid syndrome Community.
Tune in now and hear how these changemakers are using their voices to elevate ours.
And if you are interested in starting your advocacy journey, check out the link in bio/comments to sign up for Rare Across America, which sets up virtual meetings with Senate offices and in-person in-district meetings with Representative offices from August 4-15, 2025!
www.RareAcrossAmerica.org
Last, we want to thank all our advocacy partners who are keeping us updated and informed. Check out the organizations below and maybe even sign-up for their emails!
EveryLife Foundation
National Organization for Rare Disorders (NORD)
National Down Syndrome Congress
The Arc
Genetic Alliance
Global Genes
Rare Epilepsy Network
Child Neurology Foundation
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