RARE Ramblings

Richard’s RARE Ramblings: FEAR!

By CONTRIBUTOR

8 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

Industry Insights

“Developing positive change in how we diagnose, treat and care for patients with a rare disease.” Rhetoric or reality?

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

Patient voice

Wings of Fire: escaping the shadows of a rare disease that was undiagnosed for 25 years

By CONTRIBUTOR

11 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

Charity & advocacy

#DuchenneCan: celebrating what people with Duchenne CAN achieve

By CONTRIBUTOR

5 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

Medical

CATNAP® registry: collecting real-world data to enhance understanding of paediatric narcolepsy

By CONTRIBUTOR

17 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

Science & tech

The real-world evidence revolution: how better research can improve patients’ lives

By CONTRIBUTOR

27 October 2022