Charity & advocacy

Rare Disease Awareness Day Calendar

By CONTRIBUTOR

14 February 2024

A day in the life

Don’t let your condition define you! David’s journey with stiff person syndrome

By CONTRIBUTOR

14 February 2024

Industry Insights

Rare Disease Day 2024: Sheela Upadhyaya previews some of the events taking place across the world

By CONTRIBUTOR

14 February 2024

Industry Insights

The UK Rare Diseases Framework: Sheela Upadhyaya reflects on recent progress across the UK

By CONTRIBUTOR

12 February 2024

Patient voice

Love isn’t rare—Ken To’s journey with Huntington’s disease

By CONTRIBUTOR

11 February 2024

Turning the tide for rare disease

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

By CONTRIBUTOR

7 February 2024

Patient voice

If you want to make God laugh, tell him about your plans

By CONTRIBUTOR

31 January 2024

Science & tech

Faster diagnosis for patients with rare diseases

By CONTRIBUTOR

24 January 2024

Industry Insights

UK report calls for more government input to make cell and gene therapies a true health system priority

By CONTRIBUTOR

9 January 2024

Charity & advocacy

Davis Out of the Unknown: a family’s life with Koolen-de Vries Syndrome and their search for treatment

By CONTRIBUTOR

3 January 2024

RARE Ramblings

Richard’s RARE Ramblings: Winter is coming… and I am ecstatic!

By CONTRIBUTOR

13 December 2023

Science & tech

The Undiagnosed Diseases Network’s mission to eradicate the diagnostic odyssey: an interview with Sarah Marshall

By CONTRIBUTOR

6 December 2023

A day in the life

A day in the life: a medically complex condition that is as unpredictable as the weather

By CONTRIBUTOR

29 November 2023

Charity & advocacy

Thoughts into Action: What is quality of life as defined by people living with inherited metabolic disorders?

By CONTRIBUTOR

22 November 2023

Charity & advocacy

Shining a light on Smith-Magenis syndrome

By CONTRIBUTOR

15 November 2023

Science & tech

What is a flare in Sjögren’s? TREND Community’s innovative use of artificial intelligence to find answers for the community

By CONTRIBUTOR

8 November 2023

Patient voice

Fostering a positive mind and body

By CONTRIBUTOR

1 November 2023