News - awareness

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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SEND Green Paper Urgent Action

July 2022

Disabled Children’s Partnership (DCP) #SENDABetterMessage Campaign In one final push to challenge the government proposals in the SEND Green Paper that could undermine the rights of families, Disabled Children’s Partnership (DCP) have put together an urgent action to target the new secretaries of state leading the review: We have just one week. One week until the government’s ‘SEND Green Paper’ consultation on changing support for disabled children and families closes.

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Raising Awareness of Leukodystrophies

July 2022

One of our community members amazing efforts to raise awareness of ALD One of our community members, Michael Conway, took part in his work ‘Take 5’ Q&A Monthly Bulletin. He shared his diagnosis of ALD and the impact it has on him. His proactive approach in raising awareness of his condition is such an inspiration.

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Disabled Children’s Partnership (DCP)

June 2022

We are a proud member of the DCP We are a proud member of the Disabled Children’s Partnership (DCP) – a growing coalition of more than 90 organisations – campaigning for improved health and social care for disabled children, young people and their families in England.

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Book of Poems

May 2022

Leukodystrophy and Motherhood One of our beneficiaries has written a wonderful and powerful book of poems about leukodystrophy and motherhood. She wants to share it with other families affected by rare disease to help others by letting them know they aren’t alone.

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Beneficiary story of living with ALD

March 2022

Helping to raise awareness of this condition One of our beneficiaries, Michael Conway, has helped to raise awareness of Adrenoleukodystrophy (ALD). By sharing his story with many newspapers and rare disease organisations it will ensure more people know about ALD.

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