News - Rare Disease

Here are the latest news stories from Alex TLC and about topics we think you'll find useful.

Rarity Life Magazine

March 2023

For those affected by rare disease, disability and cancer Rarity Life is an online publication created by Same but Different for those affected by rare disease, disability and cancer. Includes content that is inclusive, focusing on collective experience and celebrating differences.

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The Student Voice Prize

March 2023

Winners have been announced 🦓💫 The Student Voice Prize winner’s essays have been published. The essays are interesting and informative essays focused on Rare Disease.

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Coordinating Care Report

February 2023

Produced by Genetic Alliance Genetic Alliance’s ‘Coordinating Care: Learning from the experiences of people living with rare conditions’ has been published and is available to view.

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Share your story for Rare Disease Day 🦓

February 2023

And help raise awareness of leukodystrophy 💙 Rare Disease Day is taking place on Tuesday 28th February. It will be an opportunity to raise awareness of leukodystrophy and the challenges our community members face, either as an affected individual or family member. We want to do this by sharing stories of our community members on our social media channels throughout the week before Rare Disease Day. Would you like to share your story? 💙 This is how you can get involved…

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