Joanne Lee

All views are my own.

[JWMDRC @jwmdrc]

The JWMDRC had a strong presence at NUTCRI Live 2024 @NCL_medscience today!

@c4c_network, Adult #SMA Reach and Patient Registries Project Manager, Sam McDonald, all presenting posters 🙌

[JWMDRC @jwmdrc]

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!

[NCL_RareDisease @NCL_RareDisease]

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 @RareDiseasesEU

[NCL_RareDisease @NCL_RareDisease]

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! @CityNewcastle See below for our full list of illuminations! @UniofNewcastle #LightUpForRare #RareDiseaseDay2024

[Joanne Lee @joleeene]

I’m really glad that we, @UniofNewcastle @jwmdrc, were able to invite our @c4c_network colleagues to Newcastle to celebrate all of the network’s achievements and plan for the future of c4c! 🎉

[conect4children @c4c_network]

Thank you to all of you who attended the General Assembly in Newcastle (and those who joined online)! 👏

Let's continue to work together for better medicines for babies, children and young people: "We are working for 20% of the population and 100% of the future", Mark Turner 💪

[Joanne Lee @joleeene]

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.

[JWMDRC @jwmdrc]

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

[JWMDRC @jwmdrc]

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!
https://t.co/CHcRGg5j5R

#RareDiseaseDay

[Rare Disease Day @rarediseaseday]

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: https://t.co/LRb1IGhZBZ

🏠 Find out how to light up your home: https://t.co/S0PNzbafDo

#LightUpForRare

[JWMDRC @jwmdrc]

We are very proud of the @uniofnewcastle and @c4c_network 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.

[JWMDRC @jwmdrc]

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 @DuchenneUK

[Joanne Lee @joleeene]

@EJPRareDiseases are looking for feedback to help keep improving their great resources. To make sure that you have your say, complete the survey before the end of today.

[ERDERA @ERDERA_org]

📢We want to hear from you to keep improving 3 EJP RD services:
- Mentoring for translational research
- Follow-on funding support
- The Innovation Management Toolbox
📝Complete the survey here: https://t.co/kK5ECg2oiF

[conect4children @c4c_network]

How can academia and pharmaceutical companies collaborate to tackle interoperability of paediatric clinical data? 👉 Interesting perspectives from c4c in this new paper published yesterday: https://t.co/mSY0shoG83

[JWMDRC @jwmdrc]

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

https://t.co/AgTeXt1zmm

[JWMDRC @jwmdrc]

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:

https://t.co/7cVlVlqwY0

[ERDERA @ERDERA_org]

💻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: https://t.co/xnD7ua9ObY

[NCL_RareDisease @NCL_RareDisease]

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 https://t.co/1dr27iPJo0 https://t.co/o9Z2WyfHeD

[Joanne Lee @joleeene]

Thank you @ECRIN_ERIC 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 https://t.co/YdqnFCqKV4

[ECRIN @ECRIN_ERIC]

A big thank you to all those who joined us in Prague (both in person and online) and contributed to the discussion on the bottlenecks in academic trials for drug repurposing in rare diseases.
👏@EJPRareDiseases for this NSS event.
👉https://t.co/0Ez3upoBX6

[NCL_RareDisease @NCL_RareDisease]

V. Hedley @RareDiseasesEU and @joleeene 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

[ERDERA @ERDERA_org]

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.