Turning the tide for rare disease

Turning the tide for rare disease

The fragile ecosystem: how federal policy changes threaten rare disease research and patient care

By Nicola Miller, RARE Revolution

2 July 2025

Turning the tide for rare disease

Former NFL, University of Kentucky football star, Art Still, working to shine a spotlight on rare heart disease

By CONTRIBUTOR

25 June 2025

Turning the tide for rare disease

A movement born from silence: The global mission to treat CTNNB1 syndrome

By admin

11 June 2025

Turning the tide for rare disease

A tapestry of hope, advocacy & community: Day 2 of the NPUK AFC and IW 2025 (Part 2)

By Becky Pender, RARE Revolution

26 May 2025

Turning the tide for rare disease

A tapestry of hope, advocacy & community: Day 2 of the NPUK AFC and IW 2025 (Part 1)

By admin

26 May 2025

Turning the tide for rare disease

Highlighting breakthroughs and collaboration: The NPUK Annual Family Conference & Interactive Workshop 2025

By admin

26 May 2025

Turning the tide for rare disease

Life wants me here!

By admin

9 May 2025

Turning the tide for rare disease

This isn’t just a day. It’s a movement. Undiagnosed Day 2025: why action can’t wait

By admin

29 April 2025

Turning the tide for rare disease

We’re not here for symbolic victories—we’re here for action

By CONTRIBUTOR

2 April 2025

Turning the tide for rare disease

Beyond Rare Disease Day—Improving quality of life for people living with HAE

By CONTRIBUTOR

26 March 2025

Turning the tide for rare disease

The power of the patient voice in rare disease research

By CONTRIBUTOR

12 March 2025

Turning the tide for rare disease

A personal and professional drive to advance research for rare disease

By admin

24 February 2025

Turning the tide for rare disease

The transatlantic partnership advancing breakthrough science into innovative treatments for rare diseases

By CONTRIBUTOR

5 February 2025

Turning the tide for rare disease

Rare disease champions: how Cycle Pharmaceuticals and their partner Inceptua are redefining pharmaceutical philanthropy and opening up access to novel therapies in low and middle-income regions

By Becky Pender, RARE Revolution

15 January 2025

Turning the tide for rare disease

Blood Sword by the Duncan Brothers: A mythical sword-wielding comedy to raise awareness of an underdiagnosed genetic condition

By CONTRIBUTOR

8 January 2025

Turning the tide for rare disease

Bridging the gap: differing perceptions of generalised myasthenia disease burden

By CONTRIBUTOR

11 December 2024

Turning the tide for rare disease

Becker muscular dystrophy patients find hope in building a community

By CONTRIBUTOR

4 December 2024

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