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

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/

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/

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/

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

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…

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

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

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)

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

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

Delighted to be in #Brussels this week for #ECRD2024 with collaborators old & new! The goal for this key #raredisease conference is to ensure RD is a priority for the next European Commission & Parliament: really key for our UK activity too! #rarediseasewithoutborders

Great messages from the mental health session here at #ECRD2024 - many ways to support better mental health in #raredisease : it's more than just sitting down with a professional. RD patient support groups can play such a key role, e.g reducing isolation - all this helps!

V.Hedley & Joanne Lee from our #Newcastle Centre for #RareDisease are in #Bari this week for the final meeting of the 5 year @EJPRareDiseases initiative, which developed tools & methods to advance RD research, in terms of data, diagnostics, translation, mentoring, PPIE & more

Really interesting to hear about the range of research projects (77 of them!) the @EJPRareDiseases initiative has funded over the last 5 years. Especially good to see projects like #SAPIENCE presented by Carsten Finke, exploring social & psychological impact of #raredisease

🚀 Experts in our Newcastle Centre for #RareDisease are proud to have partnered in the European Joint Programme on Rare Diseases #EJPRD 🚀 Check-out this new publication on 'Building the RD Research Ecosystem'🌍📚 to read about the achievements! shorturl.at/Z5J85

Our #Newcastle Centre for #RareDisease is committed to collaborating nationally & internationally, working for better RD policies alongside groups like EURORDIS-Rare Diseases Europe & participating to events like the European Economic and Social Committee hearing on a RD Opinion💜 tinyurl.com/5n9xymue tinyurl.com/3acfpx23

A 2017 EURORDIS-Rare Diseases Europe survey collected ground-breaking data on the daily impact of #rarediseases on patients & carers - please complete/share this NEW survey, to build a stronger evidence base &help develop policies & services that truly reflect patient need! tinyurl.com/45ue4y9u

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