See all the latest news, blogs and updates from the medical sector.
News
Little Bus Big Ride
To celebrate their family business turning 100 years old, three brothers from Nantwich, Cheshire decided to embark on the adventure of a lifetime.
01/12/2025
News
New hope for children with devastating rare genetic disorder, thanks to world-first research in Manchester
The parents of a three-year-old boy born with a devastating, life-limiting genetic condition say they are now excited for his future after he received a revolutionary stem cell gene therapy treatment.
24/11/2025
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Lessons from Taiwan
Sophie Thomas shares the latest updates from the Newborn Screening Summit & 6th APAC Educational Forum for Families and Caregivers on MPS in Taiwan.
20/11/2025
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Get involved in research more easily with RDRP's research registration
Help shape the future of rare conditions by signing up to take part in research. Find out why it's important and how to hear about research opportunities.
24/10/2025
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Bob Stevens selected for prestigious 2026 PAL Award
After reviewing numerous nominations and considering many amazing individuals, the WORLDSymposium 2026 Awards Committee has selected Bob Stevens as the recipient of the 2026 Patient Advocate Leader (PAL) Award.
06/10/2025
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Update from Bob's US tour
This week, our Chief Executive Bob Stevens and RDRP colleague Bennie Marshall-Andrews have been on a vital whirlwind tour of some of our pharma partners in the USA. Bob shares some important updates from the trip.
30/09/2025
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Now is the time: global unity for rare disease progress
We urge our global rare disease community to stand with us and demand smarter, faster and more ethical clinical trial pathways that serve the people who need them.
23/07/2025
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Time Matters: A message from the global MPS community
For families affected by neuronopathic MPS, every second counts. But too often, children are diagnosed too late to take part in clinical trials or access treatments that might help them. That’s why we are calling for urgent changes.
27/06/2025
News
Fabry International Network (FIN) meeting 2025
This year’s meeting in Lisbon marked the 20th anniversary of the Fabry International Network (FIN), a time to reflect on two decades of collaboration and progress.
29/05/2025
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MPS Awareness Day event a success
We held an event on MPS Awareness Day to say thank you to our supporters and volunteers for their contribution to the charity's work.
