We're already planning our virtual conference for 2024. Will you join us and save the date? More information to come!
#curegm1 #savethedate #raredisease #community #conference #events
This is our Sarcoidosis Sister Andrea Maione and she is a Beautiful Face of Sarcoidosis!💜
#Sarcoidosis #raredisease #patientadvocate #sarcoidosisadvocate #beautifulfacesofsarcoidosis #sarcoidosisawarenessmonth
We need systemic change.” Alexis, advocate with musculocontractural Ehlers-Danlos syndrome, explains how government can help #RareDisease patients 👉 t.ly/MpPv6
#FightForOurLives #CdnPoli #CdnHealth
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
Today is #NationalDNADay , commemorating the completion of the Human Genome Project.
Did you know 85% of #RareDiseases are genetic? That's why we need to understand our DNA.
Watch this video on genetic testing for rare and undiagnosed disorders: youtube.com/watch?v=-w1ZpW…
#DNADay
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
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…
We’re excited to launch a new interview series featuring #RareDisease patients. Their powerful stories shed light on the urgent need for improved rare disease care in
Canada. Stay tuned and join the convo ➡️ fightforourlives.ca
#FightForOurLives #CdnHealth #CdnPoli
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…
Come and join this free online webinar focused on co-ordination of care with a focus on #RareDiseases great line of speakers EURORDIS-Rare Diseases Europe Genetic Alliance UK 22Q11 Ireland Great learning opportunity CPCCONF2024 Rare Disease Clinical Trial Network, Ireland Rare Diseases Ireland RARE Ireland Don’t forget to register 😉
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
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…
#WorldOrphanUSA : 'These kids are not disposable.' - Patricia Welton founder and CEO of Beyond the Diagnosis.
World Orphan Drug Congress USA #RDAatWODC #OrphanDrugUSA #RareDisease
60% of children with genetic abnormalities will never be diagnosed.
#CTX #CTX Alliance #ULF #CerebrotendinousXanthomatosis #Leukodystrophy #RareDisease
#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).…
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? 💫
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
What a day! - Finally arrived WFH conference - so inspired 😊 Haemophilia Society #bleedingdisorder #RareDisease
#22q on the island of Ireland. Our jurisdictions are different, our #IntegratedCare needs are not.
#ICIC2024
#MnáNahÉireann
#RareDiseases
