Turning the tide for rare disease

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

Turning the tide for rare disease

A celebration of 25 years in advocacy: Tanya Collin-Histed, CEO of the International Gaucher Alliance

By CONTRIBUTOR

18 November 2022

Turning the tide for rare disease

Finding a cure nobody else is looking for: why Geri and Zach shoot for the moon

By CONTRIBUTOR

31 October 2022

Turning the tide for rare disease

What I learned raising a son with haemophilia: Stormy’s story

By CONTRIBUTOR

12 October 2022

Turning the tide for rare disease

CMTC-OVM: improving the lives of people with blood vessel abnormalities (vascular malformations)

By CONTRIBUTOR

3 October 2022

Turning the tide for rare disease

Being a strong father does not mean staying silent in times of trauma

By CONTRIBUTOR

14 September 2022

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