RT @evoke_incisive: What will it take to address the #UnmetMedicalNeeds of people living with a #RareDisease?

With @EUCOPE we are proud to join the #Partnering4PNH community & MEPs @istvan_ujhelyi @kympouropoulos @mgracacarvalho to celebrate #RareDiseaseDay2023 & discover their #PNH consensus paper

🐦🔗: https://n.respublicae.eu/mgracacarvalho/status/1630968775498399750

'Rare diseases are in fact not rare, rather they are collectively common'

We must all do what we can to ensure a greater focus is placed on rare diseases both in Ireland and at EU level 🇪🇺🇮🇪

@RareDiseasesIE
#RareDiseaseDay2023
RT @EU_Health: Rare diseases, numerous patients.

Up to 36 million people in the EU live with one of the over 6000 distinct #RareDiseases

Our EU action aims to improve the diagnosis, care and treatment of patients through the pooling of…

🐦🔗: https://n.respublicae.eu/FitzgeraldFrncs/status/1630605911784931342

Oggi è la Giornata mondiale delle malattie rare, un'occasione per sensibilizzare sulle difficoltà che vivono moltissime persone: 300 milioni nel mondo, di cui oltre 2 milioni solo in Italia.
Attuiamo il Piano nazionale e non perdiamo altro tempo! #RareDiseaseDay2023

🐦🔗: https://n.respublicae.eu/brandobenifei/status/1630609590827073538

1⃣ in 20 people live with a rare disease. In the 🇪🇺Parliament we are at least two persons living with rare diseases. On #RareDiseaseday2023 we aim to increase the awareness and knowledge! 📸 with my @EPPGroup colleague @kympouropoulos, chair of the EP Disability Intergroup.

🐦🔗: https://n.respublicae.eu/DavidLega/status/1630591704586756096

#RareDiseaseDay2023

🐦🔗: https://n.respublicae.eu/istvan_ujhelyi/status/1630577341809278976

Happy to be champion for @Together4RD. There are strong bonds connecting us rare diseases patients. Cross-border collaboration can lead towards common objectives hay correspond to unmet needs and ensure better quality of life for everyone. #RareDiseaseDay2023
RT @Together4RD: MEP @kympouropoulos is a Champion for Together4RD, and the wider #RareDisease community. He reminds us of the importance of coming together to unlock better #patient care. #RareDiseaseDay2023…

🐦🔗: https://n.respublicae.eu/Kympouropoulos/status/1630511594902781953

Very happy to co-sign this letter from my colleague @Frederiqueries requesting an 🇪🇺 strategy on #rarediseases for #RareDiseaseDay2023
RT @Frederiqueries: #RareDiseaseDay 📮Lettre envoyée à la présidente @vonderleyen,
43 députés demandent avec moi une stratégie européenne contre les maladies rares, les patients l’attendent, 21 pays de l’UE soutiennent la demande, à la @EU_Commission de passer à l’action. https://www.theparliamentmagazine.eu/news/article/boosting-orphan-drugs-development-and-accessibility-in-europe

🐦🔗: https://n.respublicae.eu/BillyKelleherEU/status/1630511476996751363

Heute ist der #TagSeltenerErkrankungen

Noch immer wird nicht genug geforscht,weil es sich nicht lohnt,weil?zu wenige Menschen

Häufig sind die Menschen auf sich gestellt und werden nicht immer ernstgenommen ⤵️ #RareDiseaseDay2023

🐦🔗: https://n.respublicae.eu/k_langensiepen/status/1630500740710948865

RT @ESCAdvocacy: Access to specialised cardiac examination is essential for rapid #diagnosis of atypical features and #rare #CardiovascularDiseases. But #CardiovascularHealth disparities persist.
More information ➡️ @escardio Cardiovascular Realities https://t.co/uJpqQHyo6L

#RareDiseaseDay2023

🐦🔗: https://n.respublicae.eu/mgracacarvalho/status/1630490105050701824

Rare disease patients often spend years enduring a “diagnostic odyssey”
What if quantum technologies were to revolutionise healthcare?
📺 Watch or
📑 Read
https://www.europarl.europa.eu/thinktank/en/document/EPRS_ATA(2022)737121
#rarediseaseday2023 @MetzTilly @TomislavSokol @Frederiqueries

🐦🔗: https://n.respublicae.eu/EP_ThinkTank/status/1630469852539543553

Dnes je Den vzácných onemocnění #RareDiseaseDay. Den, který zvyšuje povědomí o osudech lidí, kteří trpí vzácným onemocněním a vzácných lidech, kteří si zaslouží naši pozornost a celoevropský přístup v léčbě.
#vzacni2023 #jsmevtomspolecne #RareDiseaseDay2023

🐦🔗: https://n.respublicae.eu/KnotekOndrej/status/1630464744195870721

RT @KuuselaJenni: Ensi viikolla @Invalidiliitto 'ssa pidämme verkkoillan kansainvälisestä vaikuttamisesta. Kannattaa tulla kuulolle oppimaan lisää, puhujina @spietikainen ja @EllenNirhamo sekä Tuija Ekegren. #harvinaiset #rarediseaseday2023 https://www.invalidiliitto.fi/tapahtumat/harvinaiset-ja-kansainvalinen-vaikuttaminen

🐦🔗: https://n.respublicae.eu/spietikainen/status/1626580364415336449

RT @GeneticAll_UK: Minister for Health and Social Services @Eluned_Morgan is talking about how #RareDisease is a good example of the four UK nations working collaboratively to implement the UK Rare Diseases Framework #CareForRareWales #RareDiseaseDay2023

🐦🔗: https://n.respublicae.eu/Eluned_Morgan/status/1625569199937490952