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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

158 Followers  |  59 Following  |  11 Posts  |  Joined: 01.01.2025  |  1.6218

Latest posts by rd-rn.bsky.social on Bluesky

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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

14.03.2025 09:04 — 👍 0    🔁 0    💬 0    📌 0
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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

10.03.2025 19:08 — 👍 2    🔁 0    💬 0    📌 0
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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

25.02.2025 16:57 — 👍 3    🔁 1    💬 0    📌 0
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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

11.02.2025 17:05 — 👍 4    🔁 1    💬 0    📌 0
Post image 10.02.2025 13:05 — 👍 0    🔁 0    💬 0    📌 0

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

10.02.2025 13:05 — 👍 1    🔁 0    💬 1    📌 0
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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

06.02.2025 12:56 — 👍 1    🔁 0    💬 0    📌 0

Can’t wait to celebrate #RareDiseaseDay2025 with the community at @camrare.bsky.social Rare-I-Tea Party! 🎈 🥳

31.01.2025 11:25 — 👍 2    🔁 0    💬 0    📌 0
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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

30.01.2025 15:30 — 👍 2    🔁 0    💬 0    📌 0
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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

28.01.2025 19:22 — 👍 3    🔁 1    💬 0    📌 0
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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

23.01.2025 13:11 — 👍 4    🔁 1    💬 0    📌 0

@rd-rn is following 20 prominent accounts