News - Rare Disease

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

Join a Rare Disease Day 2024 Reception

February 2024

Join one of the Rare Disease Day Receptions being held by Genetic Alliance Genetic Alliance UK are hosting the Rare Disease Day Receptions for Rare Disease Day on Thursday 29th February.

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Neurological Conditions Programme

January 2024

Shared by The Neurological Alliance Our friends, The Neurological Alliance, are sharing a programme called ‘Inside Neurology: Our Unique Brain’, which highlights the results of My Neuro Survey and the importance of improving services for people with neurological conditions in the UK.

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Rarity Life magazine

December 2023

A magazine which celebrates differences Rarity Life is a global magazine that includes arts, culture and fashion plus life stories, highlighting inspirational people.

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Young People’s Survey

December 2023

Disabled Children’s Partnership first children and young people’s survey We wanted to share details of the Disabled Children’s Partnership’s first children and young people’s survey.

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The London Rare Disease Showcase

December 2023

Presentations and photos available to view The London Rare Disease Showcase aims to shed light on the latest innovations and advancements occurring in the field of rare diseases, with special emphasis on the vibrant rare disease landscape in the UK’s capital.

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Advanced Therapies Adoption Challenge Report

December 2023

ATTCs in a call for action to assure the future of Advance therapies adoption in the UK Our CEO, Sara Hunt, took an active part in a highly proactive event in October, which saw almost a hundred influential, knowledgeable and experienced minds from government agencies, industry, the NHS leaders and people with lived experience met at the Royal Society of Medicine in London to discuss barriers and develop solutions to the UK Advanced Therapies Adoption Challenge. To watch her presentation: Patient Experience

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