News - awareness

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

Rare Disease Day 2024

February 2024

Information about how you can get involved this year It’s less than three weeks until Rare Disease Day on Thursday 29th February. We are sharing about the different ways you can get involved.

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BPNA Annual Conference

January 2024

We attended to help raise awareness of leukodystrophy Our CEO, Sara Hunt, and Support Services Manager, Karen Harrison, attended the British Paediatric Neurology Association (BPNA) annual conference. We had a conference stand at the event to help raise awareness of leukodystrophy with doctors attending the event who specialise in the care of children with neurological disorders.

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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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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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Rare Disease Panel Discussion

November 2023

Karen was a panellist at RareSummit23 Karen was a panel member for a session at Raresummit23 hosted by CamRARE. She formed part of the panel for the ‘Advanced Therapies: Navigating Challenges and Fostering Collaboration for Patient Access’ session. This was focused on cell and gene therapies for rare diseases, and the question of whether there is “adequate service provision, staffing and infrastructure in place to deliver each and every gene therapy safely, effectively and efficiently?”.

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