On #EuropeanAlpha1AwarenessDay , we support our patient community in their battle against this #raredisease .
Only 7/100 #alpha1 patients receive a timely diagnosis.
Join our call for equitable access to care and treatment in Europe! #unitedforalpha1 ⤵️
alpha1europe.org/european-alpha…
🎙️Calling researchers to join the conversation about #RareDisease on the Island of Ireland! Not too late to submit your abstract for the RAiN #ECR forum Queen's University Belfast 🎓 CPCCONF2024 Melissa Kinch Prof AJ McKnight 22Q11 Ireland Rare Disease Clinical Trial Network, Ireland RARE Ireland Rare Diseases Ireland
We're delighted NCL_RareDisease are partnering with Uni of Birmingham and Queen's University Belfast 🎓 to create LifeArc Centre for Acceleration of Rare Disease Trials.
£12M in funding will enable rapid approval of new rare disease therapies for use in the NHS. 🎉
#WeAreNCL
ncl.ac.uk/press/articles…
Crucial discussions yesterday on menstruation and intimacy for women with bleeding disorders 🙌🏻 Also great to see the work being done on the rares! #WFHCongress2024 Haemophilia Society #bleedingdisorder #RareDisease
It's not too late to submit an abstract to our ECR! Due to high demand, we have extended the deadline for submission 🥳 A great opportunity to network with #RareDisease peers 💫
Submit an abstract👇 docs.google.com/forms/d/1qbFmJ…
#California is one step closer to establishing a #RareDisease Advisory Council! Earlier this week, the bill to establish an #RDAC , introduced by Assemblymember Rick Chavez Zbur, passed out of committee, a major milestone.
Learn more and take action to move the bill forward: bit.ly/3y4ysTG
Do you live with vasculitis, lupus, scleroderma or Sjögren's syndrome and are a UK resident? Please participate in the survey : ipsos.uk/RAIRDAsurvey20…
#vasculitis Vasculitis UK - In memory of John Mills MBE 💙💚 VIA #rarerheumaticdiseases #raredisease Jane L Edwards 📚
🌟 Your story shapes healthcare! 🩺💬 Be the voice that guides research and treatments for #RareDisease . Learn how to get involved: fda.gov/patients/learn…
Great to be at #LATSS2024 today with LifeArc for the translational science summit and connect with the LifeArc Centre for Acceleration of #RareDisease Trials.
Always nice to see a neuron in the graphics #CharcotMarieToothDisease #CMTASTAR
All systems go, as we prepare for the very first ECR forum Queen's University Belfast 🎓 on the 10th of May! Have you submitted your #RareDisease research yet? 💫
#22q on the island of Ireland. Our jurisdictions are different, our #IntegratedCare needs are not.
#ICIC2024
#MnáNahÉireann
#RareDiseases
#WorldOrphanUSA : We're kicking off strong with a #PatientAdvocacy -focused session 'Understanding and addressing the unique needs of rare disease patient advocacy leaders and communities' featuring Dr. Al Freedman, Daniel DeFabio (DISORDER: The Rare Disease Film Festival), & Michelle Davis (@ifopa).…
Two top-tier papers in a month from Wyatt Yue's lab👏👏highlighting how structural biology unlocks opportunities for drug development, including in #raredisease . The MTHFR protein is a highly attractive drug target because of its unique fold in the human proteome.
Delighted to be working alongside The Lily Foundation Muscular Dystrophy UK @Cam_Mito UCL_QS_CNMD @TaylorLabNCL and others on the LifeArc Centre for Rare #Mito diseases! An ambitious platform which will have a huge impact on #raredisease research.
Oh yeah, we have in the future a lot of work to do with our #raredisease named #hemophilia 🩸
WFH EHC_Haemophilia EAHAD FEDHEMO - Hemofilia #WFHcongress2024
Super excited to be a part of this important LifeArc #mito programme going forward over the next 5 years Newcastle University NCL_RareDisease Gavin Hudson Laura Greaves Matthias Trost 🇪🇺 Sarah Pickett Stewart Lab, Mitophile David Stroud
Thank you Suzanne McGonagle & The Irish News sharing progress & hope for the future for people living with #RareDiseases #RareDiseaseNI . Looking forward to driving change with co-leads Timothy Barrett Dave Jones & Volker Straub Queen's University Belfast 🎓 Uni of Birmingham Newcastle University Public Engagement MHLS