🚨 We're hiring - Senior Policy and Research Officer! The role will bring the voice of people living with genetic, rare and undiagnosed conditions to the centre of innovative research programmes and cutting-edge policy discourse. Apply today 👉 ow.ly/869x50Svggk

UPNAT Director Haiyan Zhou Dr Haiyan Zhou will be speaking tomorrow alongside UK DRI Director Mina Ryten Mina Ryten at the Genomics England Summit about the UK Platform for Nucleic Acid Therapies- UPNAT and enhancing rare disease treatment: genomicsresearchsummit.co.uk

Last month, NATA had the pleasure of attending the UK Platform for Nucleic Acid Therapies- UPNAT Inaugural symposium at UCL Institute of Child Health in London. NATA is proud to be part of the #UPNAT node. Together, we are developing a #translational and regulatory roadmap for nucleic acid therapies.🙌

Red Flags of Rare Disease🚩Misdiagnosis and Delayed Diagnosis. For the third in our series highlighting the red flags of rare disease, our ambassador Emily Livesey tells us all about her experience with these red flags and her advice to healthcare professionals.

Our #Newcastle Centre for #RareDisease is committed to collaborating nationally & internationally, working for better RD policies alongside groups like EURORDIS-Rare Diseases Europe & participating to events like the European Economic and Social Committee hearing on a RD Opinion💜 tinyurl.com/5n9xymue tinyurl.com/3acfpx23

Join the GenethicsForum on October 1st in Manchester! 🌟 A space for healthcare pros & others to tackle tough ethico-legal issues in genetic medicine. This edition focuses on #rareconditions. Don't miss out!🧬 #GeneticMedicine #HealthcareEthics #rarediseaseresearch

📌What is Progressive Supranuclear Palsy (PSP)? ⚡ Find out more and see what our ExPRESS node is up to! #rarediseases #AtypicalParkinsonianDisorders #healthresearch

📣 We are looking for patients with a 𝗻𝗲𝘂𝗿𝗼𝗱𝗲𝘃𝗲𝗹𝗼𝗽𝗺𝗲𝗻𝘁𝗮𝗹 𝗱𝗶𝘀𝗼𝗿𝗱𝗲𝗿 𝗮𝘀𝘀𝗼𝗰𝗶𝗮𝘁𝗲𝗱 𝘄𝗶𝘁𝗵 𝘁𝗵𝗲 #𝗦𝗥𝗥𝗠𝟮 𝗴𝗲𝗻𝗲 (OMIM 620439) If you know of any cases, ask them to contact us 📩 and to register on #Share4Rare ✍️ bit.ly/S4R-Registrati…

🌍 Calling all 𝗽𝗮𝘁𝗶𝗲𝗻𝘁 𝗼𝗿𝗴𝗮𝗻𝗶𝘀𝗮𝘁𝗶𝗼𝗻𝘀! Open a profile on #Share4Rare and join a global network of individuals with #rarediseases. Boost collaborative #research and connect with others who share your journey ⛵ 💙 share4rare.org/patient-organi…

📢Our 2nd Annual Conference is happening on 25th March 2025! Mark your calendars and join us in #Manchester 🔔Stay tuned for more updates! #RDRUKcon #RareDiseaseResearch #raredisease #Livingrare #hopeforrare

📢Join us for a free webinar where we'll dive deep into PPIE, addressing your burning questions and exploring best practices! 🌟Whether you're new to PPIE or looking to refine your approach, this session is for you! Register now! tinyurl.com/576y2u78

📣Meet Sadia Haqnawaz Sadia Haqnawaz, who will be sharing her story and thoughts with us on 15 October. 🌟Register now! tinyurl.com/576y2u78 #PatientandPublicInvolvementandEngagement #speakerspotlight #research #raredisease

📢Calling early career researchers working in rare disease – highlight your research engagement through a new #PPIE award, hosted by Rare Disease Research UK and Genetic Alliance UK 🌟Find out more➡️🌐tinyurl.com/ECRaward #raredisease #earlycareerresearcher

🌟Would you like to share your views about clinical trials for rare conditions? Apply to join the focus group now! Application deadline: 13 October

📌Meet our speaker, Dr Amanda Stranks Dr Amanda Stranks who will share her expertise on making healthcare research more accessible and inclusive by connecting researchers with patients and the public. Register now!🔗tinyurl.com/576y2u78

🚀Meet Victoria Hedley, our Hub Co-Lead and Rare Disease Policy Manager, who has been a vital pillar of support for our coordination Hub. 💫Tune in as she takes us through the RDR UK platform & stay tuned as we have exciting news and updates to share with you!

📣Meet Prof David Church, co-lead of the LynchVax research team at University of Oxford, who will be sharing his insights on 15 October. 💥Don't miss out! 🔗Register now! tinyurl.com/576y2u78 #PPIE #LynchSyndrome #rarediseaseresearch

We shared the excitement as Haiyan Zhou Dr Haiyan Zhou presented an update on her research as Harrington Scholar Harrington Discovery Institute. And appreciated the introduction to our UK Platform for Nucleic Acid Therapies- UPNAT! #OxfordHarrington2024 Oxford-Harrington Rare Disease Centre Rare Disease Research UK #RareDisease

Don't forget to put together your application for our Rare Diseases Genome Editing Mice for Medicine call to be in with a chance of getting your free, novel, genetically altered mouse model generated by the Mary Lyon Centre Deadline: 3rd October har.mrc.ac.uk/projects/gemm/…

📌Hear from Prof. Louise Locock, who will share her insights on patient and family involvement in research and care. ⚡️Join us on 15 October for our free webinar on PPIE! 🔗Register now! tinyurl.com/ppiewebinar #PPIE #HealthResearch #PatientCare