Rare Disease Research Network_RDRN
rd-rn.bsky.social
Rare Disease Research Network_RDRN
@rd-rn.bsky.social
An online hub supporting patient driven research ideas to be realised & flourish. Open to all.

Join the #RareDisease #Research revolution at www.rd-rn.org

* connections * resources *mentoring

NIHR funded, co-created by CamRARE, PLRH & patient experts
Why join RDRN as a healthcare professional?

• Empower rare diseases patients to get involved in research
• Share your expertise
• Become an ambassador for the patient-driven research movement

Learn more here: rd-rn.org/why-join/hea...

#RareDisease #RareDiseaseResearch #HealthcareProfessionals
March 14, 2025 at 9:04 AM
Did you know we currently have over 205 members signed up to RDRN?

Our community is constantly growing, with 47 connections made and 10 research ideas shared!

We welcome anyone who is interested in rare disease research.
Find out more here: rd-rn.org

#RareDisease #RareDiseaseResearch #RDRN
March 10, 2025 at 7:08 PM
The Rare Disease Research Network is an inclusive, supportive networking hub for anyone interested in rare disease research.

Find out more on how it works by clicking here: rd-rn.org/how-it-works/

#RareDisease #RareDiseaseResearch #RareDiseaseResearchNetwork
February 25, 2025 at 4:57 PM
Join RDRN so you’ll also have the opportunity to include patient groups into your research, building impactful studies enriched with insights from lived experience, ensuring your work is more ethical, responsive, and grounded in real-world needs

#RareDisease #RareDiseaseResearch
February 11, 2025 at 5:05 PM
Join RDRN to enhance your organisation's impact and visibility; access a network dedicated to rare diseases to strengthen PPI; gather insights into cutting-edge developments, network with engaged community members, and learn from peer organisations.

#RareDisease #RareDiseaseResearch
February 10, 2025 at 1:05 PM
RDRN supports individuals in forming teams that provide opportunities to collaborate, innovate, and drive meaningful change.

Find out more about joining RDRN as an individual here: rd-rn.org/why-join/ind...

#RareDisease #RareDiseaseResearch #RareDiseaseCommunity
February 6, 2025 at 12:56 PM
Can’t wait to celebrate #RareDiseaseDay2025 with the community at @camrare.bsky.social Rare-I-Tea Party! 🎈 🥳
We’re super excited to announce our community RARE-i-Tea Party to celebrate #RareDiseaseDay2025 with @cardsforbravery & Shake Rattle & Roll for nattering, craft, sensory fun & music!
🗓️ 14:45 - 17:00 Sun 2 March
📍Cambridge

All welcome

bit.ly/Rare-I-Tea_2...

#LightUpForRare
January 31, 2025 at 11:25 AM
We’re hosting lunchtime webinars to further patient collaborative research!

We’re interested to understand more about the motivations (and challenges) when trying to conduct patient collaborative research.

To share your insights or to learn more, click here: lnkd.in/e_bQdMrW
January 30, 2025 at 3:30 PM
Are you a patient, researcher, healthcare professional, or industry leader with ideas to improve the lives of those with rare conditions? Or a funder interested in patient-centred research? RDRN connects you to support, resources, and research priorities.

Join RDRN now: rd-rn.org

#RareDisease
January 28, 2025 at 7:22 PM
We are the new inclusive, supportive networking hub for everyone interested in rare disease research. Our patient-centred approach is turning research on its head, where we want to be part of the future of rare disease research.

Find us at: rd-rn.org

#RareDiseaseResearch #RareDiseaseCommunity
January 23, 2025 at 1:11 PM