RARE News

RARE News

Visual Snow Initiative: the charity on a mission to cure visual snow syndrome

By admin

12 July 2021

Charity & advocacy

Celebrating a year of mental health support for men affected by rare conditions!

By CONTRIBUTOR

30 June 2021

RARE News

All change at Genetic Disorders UK

By admin

2 June 2021

Charity & advocacy

Why care for carers?

By CONTRIBUTOR

31 May 2021

RARE News

It’s NOT Parkinson’s. Progressive supranuclear palsy and corticobasal degeneration

By admin

28 May 2021

Charity & advocacy

My journey with multiple sclerosis and advocacy

By CONTRIBUTOR

28 May 2021

RARE News

Non-profit partnership with Illumina aims to reduce the diagnostic odyssey for individuals living with a rare epilepsy

By admin

12 April 2021

RARE News

ShieldUs call to action for our learning disabilities community’s right to life

By admin

1 April 2021

Patient voice

Martha Harlam is on a mission and has high hopes for the future of ataxia

By CONTRIBUTOR

31 March 2021

Patient voice

Engagement through social support

By CONTRIBUTOR

29 January 2021

Medical

Phase 3 ‘Proof-HD’ trial begins in Europe for people with Huntington disease

By CONTRIBUTOR

28 January 2021

RARE News

Research grant of over 2 million Euro offers new hope for children with rare condition Schinzel-Giedion syndrome

By admin

26 January 2021

Science & tech

The transition to precision medicine “one size fits all” to “my medicine”

By CONTRIBUTOR

13 January 2021

Weblinks and references

References and signposting weblinks for: RARE Patient Partners edition 014

By admin

11 January 2021

Science & tech

Introducing our newest RARE Revolution columnist for our new #RARETech column

By CONTRIBUTOR

11 January 2021

Sunday sessions

Kara LaFrance explores the gift of faith, God and connection in a time of great separation

By CONTRIBUTOR

18 December 2020

Medical

UK’s largest ever NHS rare disease diagnosis programme launched by Mendelian and Modality NHS Partnership

By CONTRIBUTOR

17 December 2020

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