🌐 WHO is shaping the Global Action Plan for Rare Diseases 2028–2038.
Have your say! Join RDI’s information sessions on 10 November and help ensure every voice counts.
👉More information: rarediseasesinternational.org/gaprd/
Consultation closes 4 December.
#RareDiseases #RDI
Have your say! Join RDI’s information sessions on 10 November and help ensure every voice counts.
👉More information: rarediseasesinternational.org/gaprd/
Consultation closes 4 December.
#RareDiseases #RDI
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Shaping the future of rare disease research! 🧬
Join the global community at #REACT2027 in Budapest, 10–12 March, for 3 days of science, insights & discovery.
Which theme excites you most? 👀
react-congress.org
#RareDiseases #IRDiRC
Join the global community at #REACT2027 in Budapest, 10–12 March, for 3 days of science, insights & discovery.
Which theme excites you most? 👀
react-congress.org
#RareDiseases #IRDiRC
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🎉 Happy 40th anniversary to our PACC member Genetic Alliance!
Celebrating four decades of empowering patient voices, advancing research, strengthening advocacy, and expanding access to genomic testing.
#RareDiseases #GeneticAlliance
Celebrating four decades of empowering patient voices, advancing research, strengthening advocacy, and expanding access to genomic testing.
#RareDiseases #GeneticAlliance
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🌏 Expanding specialist healthcare access for children in regional WA! 🏥
The Rare Care Pilbara Hub receives $700,000+ to bring coordinated care closer to home for children with rare diseases.
#RegionalHealth #RareDiseases
Photo: Daniel Carson; copyright: The West Australian
The Rare Care Pilbara Hub receives $700,000+ to bring coordinated care closer to home for children with rare diseases.
#RegionalHealth #RareDiseases
Photo: Daniel Carson; copyright: The West Australian
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🇪🇺 @eurordis launches Europe’s Blueprint for Rare Diseases, calling for a coordinated EU Action Plan to improve equitable access to care and expertise across Europe.
🔗eurordis.org/publications/e…
#RareDiseases #EURORDIS #RDBlueprint
🔗eurordis.org/publications/e…
#RareDiseases #EURORDIS #RDBlueprint
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📚 Why do some rare diseases remain overlooked?
A new study from the IRDiRC PLUTO mission reveals major gaps in research and drug development:
🔹 50% had publications but no clinical development
🔹 Median wait for orphan drug designation: 45 years
👉 link.springer.com/article/10.118…
A new study from the IRDiRC PLUTO mission reveals major gaps in research and drug development:
🔹 50% had publications but no clinical development
🔹 Median wait for orphan drug designation: 45 years
👉 link.springer.com/article/10.118…
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🚨 Applications open! Join the RDI Youth Leadership Programme 2027–2028 to grow your leadership, connect with young rare disease advocates worldwide and drive change!
🌍 Apply by 22 Nov 2026: form.typeform.com/to/wYYV0gGV?ty…
#RDIYLP #RareDiseases
🌍 Apply by 22 Nov 2026: form.typeform.com/to/wYYV0gGV?ty…
#RDIYLP #RareDiseases
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🌟 Build relationships that move your mission forward! @GlobalGenes & Termeer Institute launch Leadership Lab to empower rare disease advocacy leaders.
💡Learn more: globalgenes.org/rare-leadershi…
#RareDisease #PatientAdvocacy
💡Learn more: globalgenes.org/rare-leadershi…
#RareDisease #PatientAdvocacy
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📣 New publication: Precompetitive collaboration can accelerate rare disease R&D by enabling data sharing, co-creating standards and tools, reducing duplication, and speeding innovation.
Discover key success factors and real-world examples. 🔗 sciencedirect.com/science/articl…
Discover key success factors and real-world examples. 🔗 sciencedirect.com/science/articl…
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🌍 IRDiRC welcomes Grace Andrews 🇱🇷 and Mohammed Harris 🇺🇸 to its Diagnostics Scientific Committee!
Together, they’ll help advance rare disease diagnosis, genomics, data sharing and shorten the diagnostic odyssey.
#IRDiRC #RareDisease
Together, they’ll help advance rare disease diagnosis, genomics, data sharing and shorten the diagnostic odyssey.
#IRDiRC #RareDisease
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📣 New publication! How can young people with rare diseases become meaningful research partners?
An IRDiRC perspective offers practical guidance for developmentally appropriate, ethical engagement.
🔗frontiersin.org/journals/pedia…
An IRDiRC perspective offers practical guidance for developmentally appropriate, ethical engagement.
🔗frontiersin.org/journals/pedia…
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🌍 IRDiRC was present at Sanofi’s Rare Dialogues in Paris, bringing regional voices together to advance rare disease research and care.
🤝 Collaboration and patient voices are key to global progress.
#RareDiseases #IRDiRC #RareDialogues
🤝 Collaboration and patient voices are key to global progress.
#RareDiseases #IRDiRC #RareDialogues
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📣 RDI Webinar: Innovative Financing for Rare Diseases.
Join the final webinar session, as experts explore how financing solutions can move from concept to implementation.
🗓️ 29 Sept | 14:00 CEST
👉events.teams.microsoft.com/event/a6caafed…
Join the final webinar session, as experts explore how financing solutions can move from concept to implementation.
🗓️ 29 Sept | 14:00 CEST
👉events.teams.microsoft.com/event/a6caafed…
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📢 Final reminder! Poster Zone applications for #WODCEurope 2026 close Monday, 28 Sept. Showcase your research to the global rare disease community. 🧬
Apply: terrapinn.com/conference/wor…
📍 Amsterdam | 26–28 Oct
Apply: terrapinn.com/conference/wor…
📍 Amsterdam | 26–28 Oct
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🚀 Registrations are open for #REACTCongress2027!
Join the rare disease community in Budapest, 10–12 March 2027, for 3 days of science, collaboration & innovation.
🔗 react-congress.org
#RareDiseases #RAREvolution #REACTcongress
Join the rare disease community in Budapest, 10–12 March 2027, for 3 days of science, collaboration & innovation.
🔗 react-congress.org
#RareDiseases #RAREvolution #REACTcongress
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🌟 Rare disease patient group leaders: make your voice heard!
Share your experience in @RareBeacon Rare Insights Study and help shape evidence that can support funding, impact and service delivery across the UK.
Take the survey by 19 October:
👉 rarebeacon.org/rare-insights-…
Share your experience in @RareBeacon Rare Insights Study and help shape evidence that can support funding, impact and service delivery across the UK.
Take the survey by 19 October:
👉 rarebeacon.org/rare-insights-…
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🌟 Welcome to IRDiRC’s new Interdisciplinary Scientific Committee members!
Elizabeth Hart 🇺🇸 (FDA) and Teguh Haryo Sasongko 🇲🇾 (IMU University) bring valuable expertise and global perspectives to rare disease research. 🤝
💡Learn more: irdirc.org/isc/
#IRDiRC
Elizabeth Hart 🇺🇸 (FDA) and Teguh Haryo Sasongko 🇲🇾 (IMU University) bring valuable expertise and global perspectives to rare disease research. 🤝
💡Learn more: irdirc.org/isc/
#IRDiRC
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🔎 Rare Disease Day 2027 launches soon!
Join EURORDIS’ campaign webinars on 19 Oct (4pm CEST) or 20 Oct (9am CEST) to discover the concept, heroes & resources. 🌍
💡More information: eurordis.org/rare-disease-d…
#RareDiseaseDay2027
Join EURORDIS’ campaign webinars on 19 Oct (4pm CEST) or 20 Oct (9am CEST) to discover the concept, heroes & resources. 🌍
💡More information: eurordis.org/rare-disease-d…
#RareDiseaseDay2027
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🎙️The SCGE Workshop will take place on 29 Sept 2026, exploring clinical delivery, regulation & payment models for individualized genome editing therapies.
Join the discussion on enabling sustainable patient access. 📩 Register now: scge.mcw.edu/scge-workshop/
Join the discussion on enabling sustainable patient access. 📩 Register now: scge.mcw.edu/scge-workshop/
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