Turning the tide for rare disease

Access to spinal muscular atrophy (SMA) treatment in Denmark: a success story of how persistence can win in the end.

By CONTRIBUTOR

15 November 2024

Industry Insights

Real-world data in EAPs: makes sense for rare diseases

By CONTRIBUTOR

13 November 2024

Patient voice

My journey with adrenocortical cancer: from diagnosis to advocacy

By CONTRIBUTOR

6 November 2024

Turning the tide for rare disease

The Acromegaly Community: An international haven for people living with acromegaly

By CONTRIBUTOR

1 November 2024

A day in the life

A Day in the Life: living with sickle cell anaemia-Naomi’s story

By CONTRIBUTOR

23 October 2024

Turning the tide for rare disease

Bringing light into the world: the father running over 200 miles for Angelman Syndrome

By CONTRIBUTOR

16 October 2024

A day in the life

A day in the life of a PSPA helpline manager

By CONTRIBUTOR

14 October 2024

Turning the tide for rare disease

Research into diagnostic tests celebrated at international conference

By CONTRIBUTOR

9 October 2024

RARE News

Dravet Syndrome UK awarded major funding boost to accelerate research into Dravet Syndrome

By CONTRIBUTOR

9 October 2024

Patient voice

Understanding palliative care

By CONTRIBUTOR

9 October 2024

Patient voice

What is pain?

By CONTRIBUTOR

9 October 2024

Charity & advocacy

Join the movement: championing care for rare musculoskeletal conditions

By CONTRIBUTOR

9 October 2024

Medical

Systemic mastocytosis: A new study reveals the perceptions and realities of this rare mast cell disorder

By CONTRIBUTOR

2 October 2024

Industry Insights

Putting patients first?

By CONTRIBUTOR

2 October 2024

Reviews

RARE Reels review: Knox Goes Away

By CONTRIBUTOR

30 September 2024

Patient voice

My unending search for a diagnosis?

By CONTRIBUTOR

25 September 2024

Science & tech

Improved patient finding strategies for rare diseases – a win-win for patients and drug developers

By CONTRIBUTOR

25 September 2024