Congratulations Taylor Lab Cambridge Clinical Mitochondrial Research Group & all! We're all very excited to see how you will address unmet need in #mitochondrial disease via this new LifeArc Centre 💚💜The Lily Foundation UCL_QS_CNMD Muscular Dystrophy UK Prof Michael Hanna Horvath Lab Jelle van den Ameele Newcastle University

Our #Newcastle Centre for #raredisease is v. proud to be coordinating Centre 4 below with experts in Uni of Birmingham & Queen's University Belfast 🎓 ! Congrats also to our Newcastle University colleagues Taylor Lab , partners in the new LifeArc #mitochondrial Centre with Cambridge Clinical Mitochondrial Research Group et. al

A momentous day! Our #Newcastle Centre for Rare Disease & JWMDRC is proud to partner in the #XpanDH project , supporting the roll-out of tools to facilitate x-border data sharing 4health & research (crucial in RD). (Join us 20.5.24 to explore UK angle! rb.gy/ql61rr)

Wonderful initiative @Lifearc1 . Art is such a powerful medium to express people's lived experience of #raredisease

Our Newcastle University #raredisease experts are proud to play a key role in the new LifeArc Translational Research Centres! We're coordinating a cross-disease trials acceleration platform & partnering in the #mitochondrial centre led from Cambridge University tinyurl.com/2x6je7sp

Our Newcastle Centre for #RareDisease is delighted to be coordinating one of 4 new LifeArc Translational Research Centres for RD! We're partnering with Uni of Birmingham and Queen's University Belfast 🎓 to deliver a 12M 5 year Trials Acceleration Platform ( #RD_TAP ) ! ncl.ac.uk/press/articles…

We're very proud to partner with EURORDIS-Rare Diseases Europe on the upcoming 12th European Conference on Rare Diseases & Orphan Products.

15 & 16 May and fully hybrid for the first time!

Register now! Members of our network get 15% off ticket price with code: ECRD24_15%_Partners

#ECRD2024

Innovative therapies are here, but access remains unequal. Join the conversation on bridging this gap at #ECRD2024 . Make a difference in rare disease treatments by registering today: rare-diseases.eu/register/

Diagnosing rare diseases takes 5 years on average. How can we do better? Discuss solutions at #ECRD2024 on May 16th. Let’s shorten the diagnostic odyssey. Details & registration: rare-diseases.eu/register/

No health without mental health! Join us to co-create a Mentally Healthy Toolkit at #ECRD2024 , helping address the mental health needs of the rare disease community. Register now: rare-diseases.eu/register/

How can we better fund therapies for #RareDisease ? Explore innovative strategies at #ECRD2024 on May 15th. Don't miss this essential discussion! Get your tickets now! invt.io/1txbqcbhdy3

Join us at #ECRD2024 on May 15-16, the largest patient-led rare disease conference in Europe. Connect with over 1000 policymakers, clinicians, patient advocates. Let’s shape the future of rare disease policy together!Use ECRD24_15%_Partners for 15% off! rare-diseases.eu/register/

We're very proud to be partnering with EURORDIS on the upcoming ECRD on 15 & 16 May 2024! Register now! Members of our network get 15% off with the promo code: ECRD24_15%_Partners
Get your tickets now! #ECRD2024 invt.io/1txbqcbhdy3

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