See all the latest news, blogs and updates from the medical sector.
News
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
News
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
News
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
Story
Starting treatment
Dave has recorded an insightful video to offer an insight into his first ever Fabrazyme infusion.
18/09/2025
Blog
Supporting Siblings: How Sibs can help families affected by MPS
The MPS Society recognises how vital sibling support is. That’s why we want to spotlight Sibs - a charity offering free, practical resources for schools to help siblings feel seen and supported.
18/09/2025
Story
Don't give up on life when it gets tricky
Read about Olivia's remarkable journey from diagnosis, the challenging pursuit of treatment to fulfilling her ambition of becoming a teacher.
18/09/2025
Blog
Together we can transform lives
Mountain climbs, golf marathons, a Tough Mudder and so much more! It is jam-packed! Get yourself a cuppa and enjoy the latest fundraising round-up!
18/09/2025
Condition
The importance of clinical guidelines
Regardless of location and specialist teams, clinical guidelines exist to ensure the same high standard of care. Learn more about our involvement in their development and see which conditions have so far been published.
21/08/2025
Story
Scarlett's Active April challenge
We caught up with Scarlett who has been doing some amazing fundraising on behalf of her friend Luna.
21/08/2025
News
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.
