Patient voice

Patient voice

Ataxia and us – Louise and Karls’ Story

By CONTRIBUTOR

20 September 2021

Patient voice

Mum of four children living with disabling rare neuromuscular disease GNEM raises awareness for foundation aiming to find a cure

By CONTRIBUTOR

20 September 2021

RARE News

Niemann-Pick UK are set to launch ‘Invisible Me’ campaign and short film ‘Invisible Manners’

By admin

14 September 2021

RARE caregiving

Parenting superpower series – the gift of listening partnerships

By CONTRIBUTOR

30 August 2021

RARE News

Michael McGrath – CEO of The Muscle Help Foundation discusses academic research with University of Hertfordshire

By admin

13 August 2021

Patient voice

World Hepatitis Day – Krista’s journey with drug-induced autoimmune hepatitis

By CONTRIBUTOR

26 July 2021

Medical

Zebras do exist: the diagnostic odyssey of rare disease patients

By CONTRIBUTOR

13 July 2021

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

« Previous 1 … 27 28 29 30 31 … 33 Next »