Turning the tide for rare disease

Turning the tide for rare disease

Congenital muscular dystrophy: Kelly and Avery’s mission to challenge perceptions of disability

By CONTRIBUTOR

7 February 2024

Turning the tide for rare disease

Alpha-1: best practices for testing for this and other late-onset genetic diseases

By CONTRIBUTOR

30 August 2023

Turning the tide for rare disease

Life in the slow lane: finding strength after ataxia diagnosis

By CONTRIBUTOR

23 August 2023

Turning the tide for rare disease

Changing the landscape for the differently-abled community one smile at a time. Dr Sai Kaustuv is our RARE Inspiration

By CONTRIBUTOR

10 May 2023

Turning the tide for rare disease

Arianna’s Magic Boots: stamping out a taboo in children’s books

By CONTRIBUTOR

26 April 2023

Turning the tide for rare disease

FOP Friends: celebrating a decade of support for the fibrodysplasia ossificans progressiva community

By CONTRIBUTOR

19 April 2023

Turning the tide for rare disease

Lea Jabre: helping to lift the voice of the stiff person community

By CONTRIBUTOR

22 March 2023

Turning the tide for rare disease

Aaron Jackson: raising awareness of organ donation, and bringing hope to the transplant community

By CONTRIBUTOR

15 February 2023

Turning the tide for rare disease

A new year brings new opportunities: Global Genes – supporting patients, caregivers, advocates and organisations

By CONTRIBUTOR

1 February 2023

Turning the tide for rare disease

Medics 4 Rare Diseases: reframing rare disease – one Instagram story at a time

By CONTRIBUTOR

25 January 2023

Turning the tide for rare disease

Barriers to care in sickle cell disease: the reflections of La’Shardae Scott, social worker and RARE mother

By CONTRIBUTOR

18 January 2023

Turning the tide for rare disease

Rare × 2 = ? What having twins with a rare condition teaches you about people

By CONTRIBUTOR

4 January 2023

Turning the tide for rare disease

The Christmas ring

By CONTRIBUTOR

19 December 2022

Turning the tide for rare disease

Rare Diseases Lesotho Association: revolutionising rare disease care and raising awareness in Lesotho

By CONTRIBUTOR

15 December 2022

Turning the tide for rare disease

Rare Land: a Greek film shining a light on alpha mannosidosis and rare disease

By CONTRIBUTOR

12 December 2022

Turning the tide for rare disease

Matt Hay: becoming a neurofibromatosis advocate and giving back to his community

By CONTRIBUTOR

1 December 2022

Turning the tide for rare disease

Jessica Massengale: living strong with scleroderma

By CONTRIBUTOR

24 November 2022

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