Turning the tide for rare disease

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 admin

10 May 2023

Turning the tide for rare disease

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

By admin

26 April 2023

Turning the tide for rare disease

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

By admin

19 April 2023

Turning the tide for rare disease

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

By admin

22 March 2023

Turning the tide for rare disease

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

By admin

15 February 2023

Turning the tide for rare disease

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

By admin

1 February 2023

Turning the tide for rare disease

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

By admin

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 Rebecca Pender

18 January 2023

Turning the tide for rare disease

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

By Rebecca Pender

4 January 2023

Turning the tide for rare disease

The Christmas ring

By Rebecca Pender

19 December 2022

Turning the tide for rare disease

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

By Rebecca Pender

15 December 2022

Turning the tide for rare disease

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

By Rebecca Pender

12 December 2022

Turning the tide for rare disease

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

By Rebecca Pender

1 December 2022

Turning the tide for rare disease

Jessica Massengale: living strong with scleroderma

By Rebecca Pender

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 Rebecca Pender

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 Rebecca Pender

31 October 2022

Turning the tide for rare disease

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

By Rebecca Pender

12 October 2022

1 2 3 Next »