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IRDiRC’s Functional Analysis Task Force Workshop Day 1 in Paris! #irdirc #taskforce #functionalanalysis

IRDiRC’s Functional Analysis Task Force Workshop Day 2: Writing the manuscript! #irdirc #taskforce #functionalanalysis #raredisease #internationalcollaboration #research

All new #EurordisRareOnAir! Host Julien Poulain is joined by 3 guests to discuss what they are looking forward to at next year’s European Conference on Rare Diseases and Orphan Products!🔊 Action within reach: Shaping the future at #ECRD2024 go.eurordis.org/0AhtQC

🌍 Join the mission to advance rare diseases research! IRDiRC is seeking new members for its Regulatory Scientific Committee (RSC). If you're from Africa, Australasia, or South America, apply by April 30, 2024. Details here: irdirc.org/irdirc-nominat…

News from Italfarmaco: results from the EPIDYS phase 3 study on givinostat for Duchenne muscular dystrophy are out. Read the full press release here: businesswire.com/news/home/2024…

LaunchR, a new network of rare disease experts, is forming to develop precision medicines for the toughest cases. With collaborations spanning globally, this initiative aims to revolutionize healthcare for millions worldwide. Read the press release here: irdirc.org/rare-disease-n…

⏳ Only 3 days left to apply! Join IRDiRC's Interdisciplinary Scientific Committee and be part of groundbreaking projects! 🚀 4 positions available starting May. Seeking diverse experts, especially from Middle East, Africa, North/South America. More info: irdirc.org/ongoing-call-f…

We're gearing up for the World Orphan Drug Congress in Boston! Join us from April 23-25, 2024, as IRDiRC proudly partners and exhibits. Don't miss Dr. David Pearce's presentation on April 24th Learn more: irdirc.org/irdirc-at-worl…

Exciting update for rare disease enthusiasts! 🌟Registration deadline for the Final EJP RD Conference extended to May 22nd, 2024! Join us on online May 27-28, 2024 for engaging sessions on RD research. Check out the agenda and secure your spot today! ℹ️ ejprarediseases.org/ejp-rd-final-c…

📢 We are at the 12th European Conference on Rare Diseases & Orphan Products #ECRD2024 this week in Brussels, where IRDiRC Vice Chair, Samantha Parker, participated in the session "Revolutionising Funding Strategies for Breakthrough Therapies in Rarer Diseases". #EU2024BE

Did you read our publication "The Chrysalis Task Force delves into the factors driving rare disease research and development."? Access the publication here: doi.org/10.1177/263300…

The Joint IRDiRC Consortium Assembly and Scientific Committees Meeting was held in China 🇨🇳🌏 where collaborative efforts and groundbreaking discussions occur to advance rare disease research globally.

IRDiRC is co-hosting, together with Hope for Rare Foundation and Fudan University, the Global Rare Diseases Research Symposium & The Second China Rare Disease Research and Translational Medicine Annual Conference from May 23rd to May 25th

The IRDiRC Consortium met in China 🇨🇳 where 34 participants attended the Consortium-Assembly Scientific Committees, followed by the Global Rare Diseases Research Symposium where 10 of the speakers were IRDiRC members. Kudos to all for driving global collaboration and innovation!

2 new innovative publications: 1: Getting your DUCs in a row - standardising the representation of Digital Use Conditions nature.com/articles/s4159…: Common conditions of use elements. Atomic concepts for consistent and effective information governance nature.com/articles/s4159…

Claudia Saidman and Marco Rizzi join IRDiRC's Regulatory Scientific Committee. Their expertise will drive innovative regulatory pathways for rare diseases. Welcome aboard! 🌟

Exciting news! A new IRDiRC paper on "Global health for rare diseases through primary care" is now available in The Lancet Global Health. Discover how primary care plays a vital role in rare disease management and the future of genetic screening. 🌍👩‍⚕️👨‍⚕️ Read more: sciencedirect.com/science/articl…

Today we share one of our latest publication on incorporating Spinal Muscular Atrophy (SMA) in newborn screening programs across Europe Patient advocacy is key in ensuring equitable and early diagnosis. Read more about the impact and policy recommendations:oaepublish.com/articles/rdodj…

🚀 The EJP RD - European Joint Programme on Rare Diseases course "Innovative Therapies and Personalized Medicine for Rare Diseases" is live! 🌟 Explore cutting-edge advancements in gene therapy, regenerative medicine, and beyond. Be a part of the revolution in RD treatment! Enroll now: futurelearn.com/courses/innova…

🧬IRDiRC's Special Edition on Newborn Screening - Real World Applications and Technologies is now out! Check out the eBook available for free in Rare Disease and Orphan Drugs Journal : f.oaes.cc/read_online/sp…