Charity & advocacy

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

Sunday sessions

Carlos Briceño explores the power and peace of the present moment

By CONTRIBUTOR

16 December 2020

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