News - Rare Disease

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

NICE Talks Podcast

July 2022

New NICE guideline on social work with adults experiencing complex needs NICE Talks is the podcast from UK’s National Institute of Health and Care Excellence (NICE). Brining the stories behind their work to improve outcomes for people using the NHS and other public health and social care services through evidence-based guidance.

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Mental Health Services Directory

June 2022

RARE Revolution have produced a useful resource RARE Revolution have compiled a Mental Health Services Directory. Coping with mental health  issues can be exhausting and often overwhelming. Even with a strong support network around you, sometimes you need to reach out for that extra help, support and guiding hand. RARE Revolution have compiled a directory of just some of the services available who can hopefully shine some light on the darkness.

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6 simple questions on reforming SEND services

June 2022

#SENDABetterMessage campaign The government is looking to reform disabled children’s services through a set of proposed policies in the ‘SEND Green Paper’. The government’s plans contain several worrying proposals that could further weaken the rights of families with disabled children and make it even harder for them to access support.

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Rare Disease long-term caregiving

June 2022

Resource regarding challenges and burdens faced Rare Revolution Magazine have produced a resource about Rare Disease long-term caregiving. It is to raise awareness of the challenges and burdens faced by Rare Disease Caregivers with gentle reminders to take care of themselves.

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Mental Health Programme

June 2022

To support families Trybes Heath – a mental health platform designed to support families affected by long term conditions – are offering six families the opportunity to join a eight week mental health pilot programme free of charge.

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Newborn Genomes Programme

May 2022

Genomics England Survey Which conditions should be screened for for as part of the Newborn Genomes Programme? Have your say by completing Genomics England survey by Tuesday 14th June💬 The survey is to test the wording of some of the draft principles that will guide Genomics England in choosing the conditions to screen for in the newborn babies’ genomes. To find out more❓: Genomics England Website To access the survey 📝 : Newborn Genomes Programme Survey

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