Thank you @EJPRareDiseases!! This meeting has been a fantastic opportunity for the JWMDRC team to catch-up with colleagues, hear about all the amazing work being carried out in the project and to hear plans for the future.

The #EJPRDGeneralAssembly2022 gathered over 100 participants in Porto, Portugal 🇵🇹. It was an opportunity to bring back together EJP RD members to meet in-person to update on the progress, the achievements, and extend the roadmap for the next year.

V. Hedley Rare Disease Policy and Joanne Lee are in #Prague today for a @EJPRareDiseases workshop discussing obstacles for academic-sponsored trials seeking to #repurpose medicines 4 #RareDiseases We're looking at tools & strategies to overcome some of these

Thank you ECRIN for this very productive meeting to discuss barriers to academic trials for drug repurposing and to hear about projects looking to address these issues. Staff from JWMDRC presented the ACT model, more info about ACT here tinyurl.com/mr2x36rf

Want an overview of #raredisease #research in #Newcastle? Check out our website & brochure! 100+ experts spanning the full translational pathway, from discovery to trials to clinic delivery, with a 360 degree social & policy focus ncl.ac.uk/rare-diseases/ tinyurl.com/c3vrwpn3

💻New free MOOC: @EJPRareDiseases launches a new MOOC entitled “Introduction to translational research for Rare Diseases” enabling you to explore therapeutic development process from the unique perspective of rare diseases ℹ️More information: ejprarediseases.org/ejp-rd-launche…

We are hiring! If you would like a job with a fantastic team doing world-leading research as a Clinical Research Associate, please have a look: bit.ly/3Tzld3b

First Boy in UK Dosed on Sarepta's Gene Therapy Trial at The John Walton Muscular Dystrophy Research Centre, thanks to the #DMDHub Central Recruitment Pilot Project dmdhub.org/hub-sites/dmd-…

How can academia and pharmaceutical companies collaborate to tackle interoperability of paediatric clinical data? 👉 Interesting perspectives from c4c in this new paper published yesterday: lnkd.in/e6r7BnYS

We had a Duvet Day for Duchenne today! Pyjamas, an amazing shared lunch with wonderful colleagues and a raffle for the rest of the month. #DuNothingForDuchenne Duchenne UK

We are very proud of the @uniofnewcastle and conect4children team's role in this important collaboration with CDISC. Data standards are a crucial step in supporting the harmonization of paediatric data in clinical trials on a global scale.

Tomorrow it's #RareDiseaseDay 2023! 💡 Light up at 7 pm wherever you are to raise awareness for people living with a rare disease! 🏛️ Find a monument being lit up near you: cutt.ly/MPUWDKx 🏠 Find out how to light up your home: cutt.ly/zPlxnHb #LightUpForRare

Today is Rare Disease Day, the international movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Find events near you! bit.ly/3SyaGWC #RareDiseaseDay

We are celebrating the exceptional work of all the women in our team at the JWMDRC for #InternationalWomensDay2023! 🙌

First day at the #REACTCONGRESS IN Berlin! Looking forward to learning lots from an excellent program of presentations. I will also be presenting a poster about our plans to replicate the TREAT-NMD® Advisory Committee for Therapeutics model in other rare diseases.

I’m really glad that we, Newcastle University JWMDRC, were able to invite our conect4children colleagues to Newcastle to celebrate all of the network’s achievements and plan for the future of c4c! 🎉

To support Rare Disease Day we have contacted Newcastle's from around the world to #LightUpForRare to create an international chain of light starting with Australia! City of Newcastle See below for our full list of illuminations! Newcastle University #LightUpForRare #RareDiseaseDay2024

Our #Newcastle Centre for #RareDisease is working towards a better future for people living with rare conditions, in which, just as #RareDiseases aren't actually all that rare, treatments aren't either #RareDiseaseDay2024 Rare Disease Policy

We are celebrating #RareDiseaseDay with @M4RareDiseases by taking part in #ShowYourStripes! People impacted by rare conditions face similar challenges because of a lack of awareness. Help spread awareness this Rare Disease Day!

The JWMDRC had a strong presence at NUTCRI Live 2024 Newcastle University Faculty of Medical Sciences today! conect4children, Adult #SMA Reach and Patient Registries Project Manager, Sam McDonald, all presenting posters 🙌