I'm attending the 11th ECRD online on 27 June - 1 July 2022! Will you join me? invt.io/1txbabojyki

A new special issue of Science reveals a near-atomic picture of the human #NuclearPoreComplex—an elaborate structure composed of hundreds of proteins that mediates the exchange of material between a cell’s nucleus and the surrounding cytoplasm. Read more: fcld.ly/ge0hm77

As International Batten Disease Awareness Day draws to a close, today also brought great news with NIH/NINDS awarding a grant to Collaborations Pharmaceuticals, Inc. to support its development of a treatment for CLN1! Details⬇️

The Bespoke Gene Therapy Consortium has reissued new AAV research opportunities! Researchers may submit nominations to inform the selection of rare diseases for pilot gene therapy clinical trials. View the RFPs at: fnih.org/BGTC

looking forward to attending the 11th ECRD online on 27 June - 1 July 2022! invt.io/1txb5e2bmqc

Read about exciting developments in #RareDisease research over the last several years in the IRDiRC State of Play

🌎International collaboration is essential to advance the #RareDisease research & improve the lives of the patients. IRDiRC Companies Constituent Committee Vice Chair Christina Waters shares the impact of IRDiRC in the #RareDiseaseCommunity. Watch here: shorturl.at/krwx7

Opening for new member: IRDiRC 's  Diagnostic Scientific Committee (DSC) is currently looking for #clinicians and experts in #genetics, #genomics, #bioinformatics, molecular diagnostics and #biochemistry to join the committee! 📝Application and more: irdirc.org/nomination-cal…

PaVe-GT, a pilot project that includes several Institutes & Centers from NIH & is led by NCATS, aims to use adeno-associated virus (#AAV) gene therapy efforts to treat four #RareDiseases, paving a path for future #GeneTherapy programs: go.usa.gov/xHSn8

Sanford Research has been measuring and helping reduce head impacts within youth football for almost a decade. Now they have a new piece of technology to help collect data- a mouthguard equipped to measure impact severity and more. Read now: san.fo/3zpwCdj

If all women were to get #HPV vaccines, potentially two-thirds of cervical cancers could be prevented worldwide. Learn about the history and discovery of HPV #vaccines. cancer.gov/research/progr… #NIAM22

🚨 We are delighted to announce the creation of Regulatory Science Committee to Tackle Regulatory Challenges in Rare Disease Research 📰Read the full press release here: irdirc.org/irdirc-announc…

Do not miss the registration deadline for the joint IRDiRC & @EJPRareDiseases International Conference on Clinical Research Networks for Rare Diseases 🚨Registration deadline: 10 November ℹ️ Agenda & more information: bit.ly/3gCSQ5L

It is now #RareDiseaseDay across the globe 🌍 📌 Organise and post your event: cutt.ly/98d6NtE ✨ Join the Global Chain of Lights & #LightUpForRare: cutt.ly/zPlxnHb 📖 Share your story: cutt.ly/s8d612W 🔥 Share our resources: cutt.ly/M8d69nH

It's #RareDiseaseDay #RDD2023! What is a Rare Disease? Check out the @rarediseasesint video youtu.be/Y7-fnM5FPQY

It's #RareDiseaseDay ! How would you describe the International Rare Diseases Research Consortium (IRDiRC) in 1 word?  ▶️ Watch 9 members responding to that question! youtu.be/IF2S_1nq4bg

It’s time to #LightUpForRare in Asia! Join the ✨ Global Chain of Lights now to shine a light on the 300 million people living with a rare disease. 👉 cutt.ly/MPUWDKx APARDO Rare Diseases IORD ORDIndia PSODCareForRare بنیاد بیماری های نادر ایران

During #RareDiseaseDay at NIH, NCATS Director Joni L. Rutter, Ph.D., prompted attendees to use this meeting to find new ways to help advance the #RareDiseases work we all do together. #RDDNIH

📢Opening for 1 new member: IRDiRC's Interdisciplinary Scientific Committee is looking for a new member with experience in rare diseases data sharing, ontologies, natural history, biobanking and registries. 🚨Deadline: 2 April 📝Application and more: irdirc.org/join-irdircs-i…

Join us in spreading awareness this #RareDiseaseDay! 🌍 IRDiRC is bringing together the incredible efforts of member organizations. Check out the collaborative post showcasing their impactful contributions on this Rare Disease Day 🔗irdirc.org/rare-disease-d…