Top Tweets for #CollectivelyCommon
One hundred fifty-seven caregivers from 15 European countries completed the survey, representing over 40 conditions, including the Phelan–McDermid, Rubinstein–Taybi, 22q11.2 deletion and Kleefstra syndromes.
#RareDiseases #CollectivelyCommon #MindTheGap
https://t.co/H2i7tV0vUP
Whilst rare diseases are #IndividuallyRare, they are #CollectivelyCommon - with over 7000 identified rare diseases affecting 3.5 million people in the UK. This #RareDiseaseDay, we're working to raise awareness across the healthcare landscape.
Absolutely! 🌟 Let's rally together to support the groundbreaking #rarediseaseawareness campaign. Every voice matters in illuminating the challenges of living with #RareDisease #Individuallyrare but #collectivelycommon ~300000 people living with #RD in #IRELAND #IamNumber17
🌟 Exciting News Alert! Join us to spread the word on the groundbreaking #rarediseaseawareness campaign. Together, let's spotlight these often-overlooked medical conditions and advocate for those affected. #RareDisease #AwarenessCampaign https://t.co/29dAkc08q7 via @rte
Today is Rare Disease Day! We support the efforts of the rare community. Take a moment today to learn something new! #rarediseasefacts #rarerevolution #rarediseaseday #rarediseaselife #raredisease #rareaware #genetics #chromosomedisorder #collectivelycommon
Today is #RareDiseaseDay2023
Let’s celebrate children, families and healthcare professionals who live with and raise awareness for rare conditions 🎉🎉🎉 #individuallyrare #collectivelycommon 💜
@NicoGagelmann @MedTweetorials @nihardesai7 @BrownHospMed @Sthanu5 We’re loving some of this outside the box thinking @AKUSociety @bpa_porphyria @pnhsupport @GeneticAll_UK #DareToThinkRare #1in17 #CollectivelyCommon
"Children with intellectual disability frequently have multiple co-morbid neuropsychiatric conditions and poor physical health. Genomic testing is increasingly recommended as a first-line investigation for these children"
#RareDiseases #CollectivelyCommon
https://t.co/l2RHvBo9pK
Congratulations and well done to all involved in this paper. Magnificent work 👏 👏👏👏👏
Prevalence of #RareDisease in Ireland
#IndividuallyRare #CollectivelyCommon @PKU_Ireland
Did you ever want to know the national incidence of Rare diseases in a country? Check out our paper! This took years of work. Massive thanks to Emer Gunne & Debby Lambert. Credit to our funders @TempleStreetHos https://t.co/jDM5IuLS8i
Dozens and dozens of other syndromes needing the same approach. #CollectivelyCommon needing #IntegratedLifespanCare
Present #Downsyndrome across the #lifespan webinars regional, national, international presentations include Dr. Brian Chicoine Medical Director Down Syndrome Centre USA Registration 05.05.22 👉 https://t.co/761ZGU1m7T 12.05.22 👉 https://t.co/9nTm0OE23Y
Thank you @FitzgeraldFrncs for the invitation to speak at an upcoming discussion webinar on "Rare Diseases in Ireland and the EU - Finding Innovative Solutions".
#RareDiseases #UnmetNeeds #IndividuallyRare #CollectivelyCommon
Excited to be hosting this webinar on 'Rare Diseases in Ireland & the EU' 🇪🇺⚕️
📅 Friday April 1st
🕑 10:00-11:30
Expert speakers including: @padraigosull, Florian Schmidt @EU_Health, @sheehangilroy @PKU_Ireland, CEO @IPPOSI & #BioMarin
Register here ➡️ https://t.co/CjtQJBtQoT
Raising awareness for the 300,000 people living in Ireland with a #RareDisease. #IndividuallyRare #CollectivelyCommon
#RaiseAToastie Campaign 2022
Donate: https://t.co/r2DrsNyjqq
#LowProtein #Promin #Violife #Toastie
@sheehangilroy @PKU_Ireland @official_espku @RareDiseasesIE @rareireland @Lesmart11659095 @22Q11_Ireland @AlanFinglas1 @Brianhemophilia @avrilbdaly @AvrilKennan @cf_ireland @CystinosisIrl Excellent opportunity to advocate for #Rarediseases well done everyone! Very powerful messages #Diagnosis #accesstomedicine #Individuallyrare #Collectivelycommon impact of rare diseases on people and their families and the whole society is often forgotten to mention or address 🤔
@22Q11_Ireland Thanks Anne! Many nurses work with individuals with #RareDiseases but don't refer as a #RareDisease often refer as #chronicillness we must raise awareness of #RareDiseases #Genetics #Genomics among #HCP #Nurses #Midwifery #Medics #individuallyrare #Collectivelycommon
Interested in the origins of congenital malformations? Check out the new study by @rod__martins lab @DMM_Journal about the cellular defects that cause tissue dysplasia and neuronal degeneration in a mouse model of Seckel Syndrome. https://t.co/rZuro3i2YE #collectivelycommon
An incredible interview by @Lesmart11659095 advocating for the expansion of #newbornscreening in Ireland. 👏 #MLDAwareness #Raredisease #IndividuallyRare #CollectivelyCommon
This morning we were joined by Les Martin, father of Cathal and Ciaran Martin, both of whom were diagnosed with MLD, in order to raise awareness about his campaign for better screening of newborn babies with rare diseases in Ireland. #IrlAM
Delighted to remind #GeneralElection2020 candidates canvassing this evening that there are approx 300,000 #raredisease patients living in Ireland, that's approx 75,000 in each constituency. Know your community 2020 candidates! #IndividuallyRare #CollectivelyCommon #Pledge4RD👊
Ashish Deshwar and @nicoleedwds report from The @Co_Biologists Workshop, which brought together a diverse group of scientists and clinicians to discuss the current challenges and opportunities in the field of birth defects research. #collectivelycommon
https://t.co/N059DJHCcf
Great work @sujas15 and what a service your are doing for a mostly forgotten (yet significant) group of our population. Hours of work/ prep gone into this. Thank you. @SimonHarrisTD @roinnslainte @HSELive
#individuallyrare #collectivelycommon
#RareDiseaseDay
Delighted to share the most updated programme #RAinDrop #Raredisease #Research partnerships workshop sponsored by @hrbireland hosted @ucddublin in collaboration with @HSELive @IPPOSI @MRCGie @RareDiseasesIE @RCPI_news @UCDMedicine @UCDHealthSystem @eurordis @22Q11_Ireland
Award winning documentary Rare in Common @UCDMedicine @sujas15
@jack_hutchy5 @2011thilo
@RareDiseasesIE
@IPPOSI
@MRCGie
@AvrilKennan
@avrilbdaly
@M4RareDiseases
@DrPas84Ele
Please share and help raise awareness of #IndividuallyRare
#CollectivelyCommon
https://t.co/JYb7dF8RU7
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