News

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

Dazzle4Rare Week

August 2022

A cross-community rare disease awareness week to enable rare disease communities to share messages for one another so that they can reach a wider audience Dazzle4Rare was established in July of 2016 with a simple goal of signal boosting rare and undiagnosed community messages. Every August, like, share, and retweet any of the posts on our and other rare disease charity social media channels. Share information about rare diseases, your own story, or educational links and information for everyone to learn more – all using the hashtag #Dazzle4Rare

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Rare Disease Resources Hub

August 2022

Free online learning platform Beacon for Rare Diseases have created a Resources Hub for patients, patient groups and advocates. It is a 100% free e-learning platform that is full of exclusive content providing guidance through every stage of the rare disease journey.

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Shared Decision Making Report

August 2022

Shared decision making from the perspective of clinicians and healthcare professionals The Patients Association have released a new report which shows that clinicians and healthcare professionals ‘regularly practice appropriate shared decision making and are optimistic about working in this way in the future’.

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Vigil Neuroscience ALSP Press Release

August 2022

VIGIL NEUROSCIENCE PRESENTS PRECLINICAL DATA ON VGL101 FOR ADULT-ONSET LEUKOENCEPHALOPATHY WITH AXONAL SPHEROIDS AND PIGMENTED GLIA (ALSP) Update from Vigil Neuroscience “Findings from our preclinical studies evaluating TREM2 agonism continue to support the therapeutic potential of our lead clinical product candidate, VGL101 for the treatment of ALSP”.

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Do you know…

August 2022

of any doctors in Cyprus with a good knowledge of ALD? Are you or a family member affected by Adrenoleukodystrophy (ALD) and are living or lived in Cyprus?

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