RARE caregiving

A road less travelled is no less worthy: A RARE mum’s reflections on special needs parenting

By CONTRIBUTOR

21 June 2024

Reviews

Madame Web: Superheroes don’t always wear capes

By CONTRIBUTOR

18 June 2024

Charity & advocacy

A day in the life: Being diagnosed with Fanconi anaemia as a child and as an adult—what are the differences?

By CONTRIBUTOR

18 June 2024

Turning the tide for rare disease

Accelerating treatment access in the United States through financial assistance, education and advocacy

By CONTRIBUTOR

6 June 2024

Charity & advocacy

Supercharging advocacy in Latin America for Hirschsprung’s disease and anorectal malformation

By CONTRIBUTOR

31 May 2024

Letters

When children take their first breath, their care is fully funded. Why isn’t it when they take their last?

By CONTRIBUTOR

31 May 2024

Charity & advocacy

Huntington’s disease (HD) was not part of my plans, but it sure has a plan for me

By CONTRIBUTOR

29 May 2024

Turning the tide for rare disease

A rare dad’s journey: Inspiring change for the rare disease community in Rwanda

By CONTRIBUTOR

22 May 2024

Patient voice

How CLN2 Batten disease changed our life: “A Mother’s Love”

By CONTRIBUTOR

16 May 2024

Industry Insights

What are the next steps for rare disease innovation in the United Kingdom?

By CONTRIBUTOR

15 May 2024

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