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Our Centre for #RareDisease actively supports international efforts to advance diagnosis, treatment, research & care for RD. Today, I'm proud to participate to the regional #CaringforRare conference in #Belgrade NORBS

Our Newcastle Centre for #RareDisease & @JWMDRC are excited to join the new European Rare Diseases Research Alliance ERDERA ! ERDERA is a 380M initiative addressing RD unmet needs💙🌎 Press release here!🗞️​ bit.ly/3zgaZA0 #ERDERA #RareDiseases Newcastle University

Great to be at World Orphan Drug Congress in #Barcelona! Hearing about recent developments globally in #raredisease diagnostics, R&D, PPIE, policy, & so much more. Good UK representation here incl LifeArc & Genetic Alliance UK! Great to update contacts old & new on what NCL_RareDisease is up to

Today we're in Paris 4 Kick-Off of ERDERA ! Newcastle University is very proud to be 1 of 8 UK assoc. partners engaging in this new Partnership 4 #raredisease . Our NCL_RareDisease experts are working mainly on building national capacity & on diagnostics erdera.org

. Hélène Le Borgne shows how the new European (& beyond!) Partnership for #raredisease , ERDERA , sits under the Horizon Europe 🇪🇺 'Health' pillar & builds on many past projects & initiatives. We have many 'ingredients' now -time to turn these into meaningful impact 4 people with RD!

Our team in Newcastle University is excited to co-lead an important activity under the new @ERDERA Partnership: creating & activating national 'Mirror Groups' to bridge nat'l and int'l activities, to help ensure @ERDERA meets grassroots nat'l needs & learn from national experiences

The rare disease community should be a major beneficiary of the coming European Health Data Space. As part of our int'l engagement, we are participating today to an expert summit coorganised by XpanDH - HEurope project European Commission - where are we on the path to sharing Health Data?

Well done all! The team from the JWMDRC here in Newcastle University were proud to participate in this showcase. Great to see how the conect4children has evolved from a project into its own sustainable entity to improve medicines' development for children & young people #raredisease

Celebrating an incredible milestone today – the 10th anniversary of JWMDRC! So proud of all the hard work and dedication from my amazing colleagues. Here's to many more years of success and growth! Volker Straub Newcastle University

Lovely to see many friends from across the #neuromuscular & #raredisease field -near and far!- here at the Baltic for the 10 year anniversary of the JWMDRC! We're proudly celebrating our John Walton Centre, which is a cornerstone of our Newcastle Centre for Rare Disease🎉🥳

The John Walton Centre has done a great deal across the past decade (& beyond) to advance diagnostics treatment & care in #neuromuscular but also for #RareDiseases broadly. Our current care & research teams stand on the shoulders of giants like Lord Walton - true pioneers! 🙌

The JWMDRC exemplifies 2 things very well: 1) advancing care & research in #raredisease requires top expertise from across the globe:here in Newcastle University we cherish our int'l community! 2) rare disease demands intl collaboration & cross-disciplinary work via diverse grants!

Today is an important day for our #Newcastle #RareDisease Centre: the kick-off meeting for a new project funded by LifeArc , which we call #RD_TAP (RD Trials Acceleration Platform)! t.ly/vIwwE We partner with Uni of Birmingham & Queen's University Belfast 🎓 & Dave Jones coordinates

Our Newcastle Centre for #RareDisease is proud to be part of ERDERA - we're involved in bridging national & int'l approaches to tackling RD challenges, & also in working towards better diagnostics. This #RareDiseaseDay , we have high hopes 4 ERDERA to make a change🤩

We're back this morning for the annual 'Genetics Matters: A Rare Disease Day event'! This is where we try to raise awareness in #Newcastle and the region of the needs of #raredisease and shpwcase some of the research taking place across the city Rare Disease Day

This year, our Newcastle Centre for #raredisease has co-organised our #GeneticsMatters Rare Disease Day event with Kasia Pirog (this is her 10th!), NIHR HRC Diagnostic & Tech Evaluation NIHR BioResource Centre Newcastle Newcastle Health Research Partnership ! Great collaboration across our Newcastle University and Newcastle Hospitals

Great to have you here today to showcase some of the research and activities of the JWMDRC Jose 👌 We have really interesting research demo tables from Rare skin, immunodeficiency, muscle, musculoskeletal and more! Rare Disease Day

Really important event taking place today in the European Parliament 4 #raredisease - 'More than you can imagine'. tinyurl.com/4eb29r7v MEP Stine Bosse / Christine opens by sharing her own story of experiencing #raredisease & imploring us all to lift up 'the most vulnerable of the vulnerable'

Today is the annual Rare Disease Research UK conference! Our #Newcastle Centre 4 #raredisease hosts the coordination hub, and we're delighted to welcome everyone to Manchester. Great talks and Panel discussions so far

Today our NIHR Newcastle BRC is running a Community Event, showcasing some of the research happening in Newcastle and, in particular, the PPIE or Patient & Public Involvement and Engagement. Our Ncl Centre 4 #RareDisease works v. closely with our BRC around research in rare conditions