News - Uncategorised

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

Eurordis: Rare Barometer Survey Results

June 2021

Eurordis have completed a Rare Barometer survey to find out about rare diseases patients’ opinions on the future of rare diseases. They received almost 4,000 responses in 23 languages and across 70 countries worldwide, meaning that they can be sure that the results are robust and credible.

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SEND Education Crisis

June 2021

Disability Rights UK Article: SEND education in crisis as Ofsted and Observer highlight provision and budget shortfalls of over £0.5 billion An article featured in the Disability Rights UK Newsletter discusses the crisis SEND education is currently facing. Please remember you can always come to us for support and advice if you are experiencing any difficulties.

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CQC Initiative: Needs of Disabled People

May 2021

CQC initiative to learn more about the needs of disabled people and their families when accessing NHS and care services The regulator for NHS and care services in England – The Care Quality Commission (CQC) – acknowledge that they have not focussed on the needs of people living with a disability and the families that support them.

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Alex TLC Steering Group

April 2021

Would you be interested in joining our Steering Group? We are currently developing new services and projects and it would be great to have feedback from individuals within our community.

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Patient Experience Survey 2020

July 2020

This survey by Genetic Alliance is designed to capture the experience of patients affected by rare and undiagnosed conditions, and their carers. The survey should take approximately 30 minutes to complete.

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