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It's time to turn the tide!
To bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community.
To bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community.
Digital Spotlights
Care for adults living with SMA in Europe: a benchmarking report—the unmet needs in the UK
4 May 2024
Digital Spotlights
Spearheading the change: 4th Scientific International Congress on Spinal Muscular Atrophy
4 May 2024
Digital Spotlights
Spinal muscular atrophy (SMA): adult care pathways in Slovenia
4 May 2024
Digital Spotlights
The power of working together towards the same goal: SMA Europe and AFM-TÉLÉTHON
4 May 2024
Digital Spotlights
Spinal muscular atrophy (SMA): a condition overview and infographic
4 May 2024
Patient voice
How CLN2 Batten disease changed our life: “A Mother’s Love”
By Joe Rumney
16 May 2024
Industry Insights
What are the next steps for rare disease innovation in the United Kingdom?
By Joe Rumney
15 May 2024
RARE News
Global nonprofit CureDuchenne to host FUTURES National Conference for the Duchenne and Becker muscular dystrophy community (May 23-26, Orlando, Florida)
By Joe Rumney
14 May 2024
RARE News
Happy Heart Week: raising awareness of Barth syndrome—over a decade of hope and support
By Joe Rumney
9 May 2024
Science & tech
Precision in patient data: How genetic databases are helping to shape rare disease population studies
By admin
8 May 2024
RARE News
The Jackson Laboratory receives $8 million in federal funding to expand research capacity in rare diseases
By admin
6 May 2024
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Introducing this week’s Digital Spotlight. Spons
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