Will we see you at WORLD?

Kathleen Coolidge | January 14, 2016

We’ve heard from several of our partners that they will be attending this year’s Lysosomal Disease Network WORLD conference next month. Will you be there? If so, let us know! Please send us an email so we can try to make arrangements to meet. Fo...

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PAL Award Recipients Announced!

Barbara Diana | January 06, 2016

We are very pleased to announce that three patient organizations -- from Spain, Taiwan and the United Kingdom -- have been selected to receive 2015 PAL Award grants. Proposals were received from patient organizations in 20 different countries and in...

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The Power of Small Steps, by Vanessa King

Annamarie Dillon | December 17, 2015

It gives us great pleasure to share the tenth blog post in the series for rare disease caregivers entitled, "Building Resilience" by Vanessa King.As patient group leaders and carers, looking after yourself will help you look after others. It is very...

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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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