Useful resources

Advocate to Advocate: Meet Rhonda Buyers

Kathleen Coolidge | December 02, 2015

We are delighted to bring you are second video in our new series called Advocate to Advocate. We created this series based upon feedback you provided to us. Namely, you’d like to learn more about best practices, and to hear more from advocates aro...

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Resilient Thinking, by Vanessa King

Annamarie Dillon | November 19, 2015

It gives us great pleasure to share the seventh blog post in the series for rare disease caregivers entitled, "Building Resilience" by Vanessa King. As patient group leaders, we can often feel under pressure  - especially so when things don’t alw...

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Here’s What We Heard from You

Lori Gorski | November 10, 2015

Recently, Genzyme Rare Community sent out an email survey to our patient advocacy organization subscribers. We wanted to know  how we were doing. Is our content useful? What are we missing? Thank you to those who took that time to fill out the surv...

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Have you found your voice?

Lori Gorski | August 05, 2015

“Patient Advocacy? I can totally see that,” said a colleague when I said that I would be taking on a new role in Patient Advocacy. It’s always scary to try something new, and I am so grateful for these simple words of support. After seven year...

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