Really key point here at Rare Disease Research UK conference from Dr Crombie LifeArc : #raredisease proposals often score pretty well but 'lose marks' for perceived smaller impact: ending with a '7 out of 10' ... so really important to find ways to prioritise rare! #RDRUKCon

We're kicking off the first conference for Rare Disease Research UK ! Senior Project Manager Anna Halstead & Prof Dave Jones welcomes us to #Newcastle #RDRUKCon . Kath Bainbridge from Department of Health and Social Care is presenting the UK #raredisease framework

Want to hear about the latest #raredisease investments of key funders like Medical Research Council NIHR Research LifeArc? Join the Rare Disease Research UK conference on 🗓️26th March, where we'll discuss how best to leverage all this new activity to get the best value for patients tinyurl.com/4wwn9yxh

✅The #RDRUK Platform consists of 11 research nodes & 1 coordinating hub
✅2 of the nodes are led from Newcastle University - for rare renal diseases & histiocytic diseases
✅Our NCL_RareDisease Centre delivers the Hub for this Platform with Genetic Alliance UK
rd-research.org.uk

'Rare Disease Research UK' ( #RDRUK ) is a new platform funded by Medical Research Council & NIHR Research to address unmet needs in #raredisease ! Learn about structure & goals here rd-research.org.uk & don't forget to register for the 1st conference on 26th March❗️tinyurl.com/4wwn9yxh❗️

Today, some our of #Newcastle #raredisease researchers are at the NIHR Newcastle BRC Celebration event. Our Centre will help us agree meaningful cross-RD activity we can deliver through the BRC, to generate new research ideas & build capacity

We're very fortunate to have the expertise of Wyatt Yue and his excellent team collaborating with us in our #Newcastle Centre for #raredisease ! The Yue Lab at Newcastle is unravelling the origins of rare #metabolic disease & seeks to identify therapies to address these conditions

The #GeneticsMatters event to mark #RareDiseaseDay is always a great way 2 raise awareness of RD & bring research closer to the public! Great work Kasia Pirog & excellent demos this year from the teams of Neil Rajan JWMDRC john sayer Joris Veltman et.al

Our #Newcastle Centre for #RareDisease is working towards a better future for people living with rare conditions, in which, just as #RareDisease s aren't actually all that rare, treatments aren't either #RareDisease Day2024 Rare Disease Policy

... (part 2) - collaboration locally, with Newcastle Health Innovation Partners (NHIP) Newcastle Hospitals NIHR Newcastle BRC , nationally Genetic Alliance UK Rare Disease UK @ and internationally through EURORDIS-Rare Diseases Europe IRDiRC EJP RD - European Joint Programme on Rare Diseases RDI and many more 💜 #rarediseaseday

(Part 1) Our #Newcastle Centre for #RareDisease is v. proud to support Rare Disease Day & is working hard to make sure the needs of people living with these 6000+ conditions are met, today & all days. Our most powerful tool here is collaboration (cont.)...

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

The Millennium Bridge, St Marys Lighthouse, and Centre for Life are some of the locations! NIHR Newcastle BRC Newcastle Health Innovation Partners (NHIP) NCL_RareDisease Rare Disease UK Rare Disease Day

Great work john sayer and team in bringing your research to the public in an accessible way 👏 👍 #RareDiseaseDay #GeneticsMatters Learn more about one of John's new renal projects here - tinyurl.com/dssjec7k

Register to join us in #Newcastle next month either in-person (limited spaces!) or online! 1st conference for the new #RDRUK Platform.
We'll explore our dynamic UK ecosystem 4 #raredisease & help Rare Disease Research UK position itself to optimise RD research at large tinyurl.com/ywpyd4sb

Have you come across #RDRUK ? It's a new Platform funded by Medical Research Council & NIHR Research to advance #raredisease research. It's composed of 11 research nodes and a coordinating hub (operated from Newcastle University by experts in our RD Centre) Check it out here -rd-research.org.uk

The Myo-Guide initiative is a great example of how the power of #AI to drive forwards new knowledge, research and improvements in care. Really powerful tool for better diagnostics in conditions with muscle involvement (both genetic and acquired!) #GeneticsMatters

NCL_RareDisease Kasia Pirog Newcastle Health Innovation Partners (NHIP) NIHR Newcastle BRC Neil Rajan Patient perspective is so important #RareDiseaseDay

The Discovery Museum is a great space for bringing research & developments in #raredisease closer to patients and public! Thanks Kasia Pirog for organising this as always! Our NCL_RareDisease is proud to support this!

Members of our #Newcastle Centre for #RareDisease are participating today to the excellent #GeneticsMatters event, opening research & science to the public! Kasia Pirog Newcastle Health Innovation Partners (NHIP) NIHR Newcastle BRC Neil Rajan john sayer