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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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