It's Here!! Rare Disease Day 2016

Cara Hesse | February 29, 2016

In honor of this year’s Rare Disease Day theme, “Patient Voice,” we are excited to launch an Expression of Hope e-book showcasing 10 years of moving and inspiring artwork produced by the lysosomal storage disorder (LSD) community. The e-book a...

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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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