@irdirc

#IRDiRC is a consortium of #RareDisease #research funding agencies n stakeholders. RTs shares likes ≠ endorsement. Account managed by IRDiRC Scient. Secretariat

 Paris, France
irdirc.org
Joined April 2015
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  • Following1.9K
  • Followers3.1K
690Media
South Africa’s newborn screening shows regional differences in access. This review covers its history, current coverage, and plans to expand equitable early detection for rare diseases. 🔗oaepublish.com/articles/rdod… #NewbornScreening #RareDisease #PublicHealth #HealthEquity
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IRDiRC reviews global rare disease research funding, priority-setting, ROI, and systemic gaps. Flexible, coordinated strategies are needed for sustained research. 🔗oaepublish.com/articles/rdod… #RareDisease #ResearchFunding #IRDiRC #OrphanDrugs
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Patient organizations are key to timely newborn screening & better quality of life for rare disease patients. Learn how they support families & healthcare globally. Read here: oaepublish.com/articles/rdod… #RareDiseases #NewbornScreening #PatientAdvocacy #OrphanDrugs
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📽️ Dr. Dave Pearce from @irdirc ( International Rare Disease Research Consortium) talked about the consortium and the importance of holding the 17th ICORD meeting in Türkiye.
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Global collaboration is key in rare disease research. The #IRDiRC @irdirc unites stakeholders worldwide to improve diagnostics, therapies, and patient outcomes. Read more: oaepublish.com/articles/rdod… #RareDisease #OrphanDrug #ClinicalResearch
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Final day of the RE(ACT) Congress & @IRDiRC Conference! 💡🔬 Busy day ahead, looking at funding models and drug repurposing in #RareDiseases. Before the wrap-up, hear from participants about some of their key takeaways and insights. Watch now 🎥👇#RAREvolution
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🌟 Special Discounts for Rare Disease Advocates! 🌍Join the 8th RE(ACT) Congress & IRDiRC Conference: ✨ Students & Trainees ✨ Patient Reps 🚀 Collaborate, share knowledge, and inspire change! 🔗 Register: loom.ly/FOgBwLw #REACT2025 #RareDisease
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🤝 @FundacionDravet, @IRDiRc, @ERICA_RD_EU, @EURORDIS, @ERNIthaca, @rarediseasesint, @ERDERA_org, Associacio Sindrome de Turner de Catalunya #AST 💬 Be sure to visit their booths and learn how they’re advancing the patient-first agenda. 🎟️buff.ly/3t7msim
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Today is #RareDiseaseDay. Ever wondered what 🇪🇺 is doing to support & facilitate this research field? Click below & find out!

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Replying to @Fondaz_Telethon
@Telethonitalia announces today its commitment to make gene therapy for Wiskott-Aldrich syndrome available to patients! Read the news here: telethon.it/en/stories-and-n…

Fondazione Telethon announces commitment to make gene therapy for Wiskott-Aldrich syndrome availa...

This is the second gene therapy abandoned by industry that Fondazione Telethon is taking over, so that it reaches the patients who need it.

fondazionetelethon.it
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This week #IreneTalksAbout rare diseases 🔬 Together with @EU_HaDEA colleagues we are dedicated to support this research field 💪 💡#DYK? 11 🆕 projects will strive under #HorizonEU at further increasing the concrete impact of R&I on #rarediseases Stay tuned for more!
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In October, the Canadian Rare Disease Coordination Meeting was held to discuss ongoing rare disease projects, identify remaining barriers, and plan the next steps to reach our collective goals. Read the report here: cihr-irsc.gc.ca/e/53813.html @GenomeCanada @irdirc @EJPRareDiseases
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Did you know over 400 million people worldwide are living with a #RareDisease? Ahead of #RareDiseaseDay, share this post to raise awareness for the community 📣
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It is critically imp. to build skills & capacity across health system to apply key technologies to help rare disease patients & families. @GenomeCanada is a proud partner of @CIHR_IG bioinformatics & computational biology research platform program. @StemCellNetwork @NRC_CNRC
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#DYK that 3M Canadians live with a #raredisease? Many face a #diagnosticodyssey before learning they have a disease/disorder with few treatment options. #Genomics plays an important role & we are dedicated to cont'd investment.  #RaiseAwareness #RareDiseaseDay2024
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Sanford Research is lighting up Sioux Falls for Rare Diseases! Join us on February 29th - the rarest day of the year - to stand with the rare disease community! ️ Together, let's shine a light on this important cause! #RareDiseaseDay bit.ly/49Bqcbh
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Registration is OPEN for the Rare Disease Day 2024 Summit in Ottawa! 🇨🇦 Don't miss this chance to join the conversation and make a difference. 🎉 Check out the updated agenda and apply for scholarships. Group hotel rate available. For more information👉tinyurl.com/yc45mewx
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Join Clive Smith, Chairman of the Board at @HaemoSocUK as he explores what #bleedingdisorders changemakers can do now to drive fundamental and sustained long-term impact that enhances quality of life for generations to come. events.reutersevents.com/pha… #hemophilia #haemophilia
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Yanis Mimouni presenting at #UDNI2023 talking about rare disease research ecosystem @EJPRareDiseases together with joint efforts much can be achieved!
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📢 Exciting news for rare disease research! More information on ERDERA here: ejprarediseases.org/erdera/ @DariaJulkowska – at Montréal, Québec

ERDERA

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ejprarediseases.org
IRDiRC@irdirc3 Oct 2023
Dr. Daria Julkowska (@DariaJulkowska) coordinator of the @EJPRareDiseases mentioned the future of rare disease research at the IRDiRC Consortium Assembly Meeting. ERDERA will be the partnership following the current European Joint Programme on Rare Diseases #IRDiRCMontreal2023
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