Build Your Strengths by Vanessa King

Annamarie Dillon | December 09, 2015

It gives us great pleasure to share the ninth blog post in the series for rare disease caregivers entitled, "Building Resilience" by Vanessa King.Being a patient group leader or carer means we draw on a wide range of skills and have to be good at ma...

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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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Resting Well, by Vanessa King

Annamarie Dillon | November 24, 2015

It gives us great pleasure to share the eighth blog post in the series for rare disease caregivers entitled, "Building Resilience" by Vanessa King.Sleep matters. Scientists suggest that we should sleep for at least one hour for every two that we are...

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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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Advocate to Advocate: Meet Christine Lavery

Lori Gorski | November 11, 2015

To help inform and inspire, we are initiating a new video series called Advocate to Advocate. We will be regularly featuring brief video interviews with patient organization leaders around the word. Our goal is to share stories of how advocates star...

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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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Advocacy in Practice

Barbara Diana | October 20, 2015

Raising awareness of rare diseases is a shared mission. And raising LSD disease awareness and funding for a patient group at the same time is a win-win situation. That’s just what happened at the recent Society for the Study of Inborn Errors in Me...

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