Science & tech

Precision in patient data: How genetic databases are helping to shape rare disease population studies

By CONTRIBUTOR

8 May 2024

A day in the life

If you’re not dancing, something is wrong…

By CONTRIBUTOR

1 May 2024

Sunday sessions

Goodness and mercy: my lupus journey

By CONTRIBUTOR

28 April 2024

A day in the life

A day in the life: living with dyskeratosis congenita (DC)—Paula’s story

By CONTRIBUTOR

19 April 2024

Turning the tide for rare disease

Jenny Decker attempts to sail solo around the globe to raise awareness of Charcot-Marie-Tooth disease

By CONTRIBUTOR

15 April 2024

Industry Insights

As we enter a new financial year, how does the UK Budget affect the rare disease community?

By CONTRIBUTOR

10 April 2024

Letters

How can we get the patient heard by the regulators?

By CONTRIBUTOR

27 March 2024

Industry Insights

Living well today: How do we make it happen for the rare diseases community?

By CONTRIBUTOR

13 March 2024

Charity & advocacy

One in a million

By CONTRIBUTOR

28 February 2024

Patient voice

Raising a child with Hirschsprung’s disease

By CONTRIBUTOR

28 February 2024

Charity & advocacy

300 million colours of Rare: three patients and caregivers share their rare disease stories

By CONTRIBUTOR

28 February 2024

Science & tech

Beyond development: Overcoming market access challenges for rare disease treatment

By CONTRIBUTOR

28 February 2024

Charity & advocacy

Glasgow Children’s Hospital Charity: flying the flag for rare disease families year round

By CONTRIBUTOR

27 February 2024

Turning the tide for rare disease

Guiding Grayson: a family’s fight to advocate, educate and save their son, Grayson, from CLN3 Batten Disease

By CONTRIBUTOR

21 February 2024

Science & tech

Dr Wendy Chung and Simons Searchlight: pioneering research into genes that cause rare neurodevelopmental disorders

By CONTRIBUTOR

21 February 2024

A day in the life

A day in the life: living with Bardet-Biedl syndrome—Tessa’s story

By CONTRIBUTOR

16 February 2024

Charity & advocacy

Rare Disease Awareness Day Calendar

By CONTRIBUTOR

14 February 2024