EURORDIS-Rare Diseases Europe @eurordis
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases. eurordis.org Paris Joined March 2009-
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Followers32K
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Avril Daly, president and Virginie Bros-Facer, CEO at @eurordis discuss how we find ourselves at a pivotal juncture in the fight against rare diseases. With numerous elections in the offing, we stand before an opportunity to shape the future. bit.ly/WomenInRARE-Eu… #WomenInRARE
Of the 350 million people living with a rare disease, over 50% are undiagnosed. Register for #ECRD2024 to be the first to hear about the results of the latest Rare Barometer survey on the diagnostic odyssey of people living with a rare disease! ➡️ go.eurordis.org/hVPVPA
Enrol in the new #EURORDISOpenAcademy online course, "Introduction to Genetics and Genomics”, in one simple click! Dive into inheritance patterns, DNA structures, genetic testing and much, much more! 🔽 go.eurordis.org/OZjXg5
Join the second #ECRD2024 Thought Leader Session, co-powered by @Together4RD and the Rare Disease Moonshot. 🗓️ 3 May 2024 ⏰ 3:00pm CEST 👉 go.eurordis.org/jDRAD2 Free to all - conference registrants not automatically registered.
Why must we #ActRare2024? 🤷 Ask @MetzTilly! MEPs from across political groups have already joined our wall of champions but this is just the beginning! Check out our 8 key policy asks 👉 go.eurordis.org/iBma62
Today rounds off an excellent 3 days of face-to-face meetings at the 2nd in-person General Assembly for @Screen4Care in Copenhagen! Thanks go to everyone involved for an inspiring meeting filled with insightful discussions and collaborative planning on the future of the project!
Join our Research & Policy Senior Manager, @gulcingumus1, and our Healthcare Advisor, @mattbolzjohn on 29 April in a webinar to mark #UndiagnosedDay! 🔗 Find out more: undiagnosed-day.org
Over 6,000 people from 50 countries responded to our latest Rare Barometer survey conducted with the @Screen4Care project. Join our webinar to find out what they said and how you can make sure that their voices are heard: 📅 30 April 2024 ⏰ 2pm CEST 👉 go.eurordis.org/XAVrIz
We are pleased that @Europarl_EN has approved the content of the provisional agreement on the European Disability Card and European Parking Card, although we regret that implementation will need to await the post-European elections period. Full statement: go.eurordis.org/Lvmr99
We welcome the newly adopted position of @Europarl_EN on the European Health Data Space (EHDS) proposal. A total of 445 MEPs voted in favour of the regulatory framework. 📖 Read the full statement from @jemalinina: go.eurordis.org/Hw8ipb
Advancing Access 💊 This #ECRD2024 session will dive into the dynamic landscape of healthcare legislation and treatment access, navigating through key regulatory frameworks and innovative approaches. Less than one month to #ECRD2024! Secure your spot! ⬇️ go.eurordis.org/hVPVPA
What exactly is JARDIN? Where has it come from? What is its purpose? And, most crucially, what potential does JARDIN hold for improving the healthcare of rare and complex conditions? 😵💫 Learn more with our JARDIN 101! 👉 go.eurordis.org/2WT4aI
Reminder! There are just five days left to sign up for our upcoming healthcare webinar! 💬 Approaches to the Evaluation of Evidence for Rare Disease and Complex Conditions Guidelines 👉 Register now: go.eurordis.org/lsP6SB
Reminder! There are just five days left to sign up for our upcoming healthcare webinar! 💬 Approaches to the Evaluation of Evidence for Rare Disease and Complex Conditions Guidelines 👉 Register now: go.eurordis.org/lsP6SB
It takes two to tango! 💃 Patient-clinician partnership in the ERNs can consist of a variety of things: setting goals, meeting to discuss concerns, evaluating progress and celebrating achievements! Are you involved in an ERN? 🙋 Find out more: go.eurordis.org/rWNgdL
The rare disease community still has vast unmet needs, and access to treatments and therapies was identified by the community as the top priority to be addressed by 2030. 💊 Europe must commit to tackling this inequality and #ActRare2024!
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
FEDER | Enfermedades .. @FEDER_ONG
39K Followers 8K Following 👉🏻 Somos la esperanza de 3 millones de personas con #enfermedadesraras 🍀 Representamos a 418 organizaciones de pacientes y a 1.546 patologías poco frecuentes
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
RarasNoInvisibles @NoInvisibles
54K Followers 8K Following Hablamos de salud, enfermedades raras, inclusion social y biomedicina. Escribe @Sombradoble Mas Información: [email protected]
Orphanet @Orphanet
6K Followers 625 Following The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
EJP RD - European Joi.. @EJPRareDiseases
4K Followers 2K Following #EJPRD - European Joint Programme on Rare Diseases | RTs shares likes ≠ endorsement
Pedro Lendinez #Enfer.. @pelendinez
5K Followers 2K Following #EnfermedadesRaras #MasVisibles. ¿Te sumas? ¡Juntos llegaremos más lejos! Opiniones personales.
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Genetics in Medicine @GIMJournal
16K Followers 3K Following Genetics in Medicine, an official journal of @TheACMG Site use policy: https://t.co/gMGoSv2TJY. Cover Photo: Bridge over the Ure by Peter Freeman
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
The Journal of Inheri.. @JIMD_Editors
3K Followers 877 Following The JIMD is the official journal of the Society for the Study of Inborn Errors of Metabolism (SSIEM). Podcasts at https://t.co/QZggmJr9Of
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
Genomics Education @genomicsedu
23K Followers 2K Following NHS England's Genomics Education Programme. Providing knowledge, skills and experience in #genomics #NHSgms #genomes100K #NHS #GenomicsConversation
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
22Q11 Ireland @22Q11_Ireland
5K Followers 5K Following Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
Rare Disease UK @rarediseaseuk
22K Followers 2K Following National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
January Payne @januarypayne
1K Followers 2K Following Health communicator. Former health journalist @washingtonpost @usnews. Dog mom. 🐶🐩🐕 Opinions are my own.
azzouzi mounir @azzouzimounir9
219 Followers 5K Following
Quennie Hingpit @HingpitQue23920
105 Followers 953 Following
mlak. @mlak1122__
7 Followers 17 Following
iPrevalence - UK Dise.. @iprevalence
40 Followers 455 Following 🏠 Home of useful disease stats 🏥 Powered by NHS prevalence data 👨⚕️ Supporting health & care with accurate data 📊 Find the dashboard on our website
何哈拉少（没有.. @he_la25040
0 Followers 97 Following
Ndmakll @shgejkyj
9 Followers 65 Following
Jan Nkeck, MD, MSc @JanNkeck
22 Followers 124 Following Medical Doctor, specialised in Internal Medicine and Rheumatology. Interest for rheumatic diseases, auto-immune diseases and cardiovascular risk.
Stephen Stockdale �.. @SteveStockyPhD
808 Followers 1K Following Novogene account manager. UCC and APC Microbiome alumnus. Twitter activity my own (personal/professional mix). Dad, rugby fan, science nerd, coffee addict.
Beatrice Nolan @BeatriceNolan16
39 Followers 169 Following
Udinahmad @udinahmadaja
1 Followers 65 Following
Ramiro Maldonado @RamMaldonado32
1K Followers 2K Following @Dukeeyecenter Retina specialist. Ophthalmic Geneticist. Clinician-Scientist. #ophthalmicgenetics #genetherapy #electrophysiology #translationalresearch
Mohamed Wafik @mo__wafik
29 Followers 526 Following 🧬 Clinical Geneticist in London | Paediatric focus | Innovating patient care through genomics | Views are my own 🇬🇧 🇪🇬🔬
Jose Fernandez @JoseFernan21301
39 Followers 539 Following
Kutand Alkım Bayer @Kutand7714
9 Followers 1K Following IZTECH-Chemistry and this is my official account.
Steamed Bun Invasion .. @BaoZiInvasion
1K Followers 5K Following Neuroscience Masters student. I am disabled by Autism
Jorja Briscoe @BriscoeJorja
4 Followers 318 Following
Laura DC @laudika12
17 Followers 74 Following
Polio Survivors Netwo.. @NetworkPolio
44 Followers 71 Following Here to support polio survivors - we're still here! We are people who are living lives with healthcare lessons for the future.
Niamh Nic Oistigín @axisofneevil
892 Followers 3K Following Ceol, craic, f é i d e a r t h a c h t a í
Frau Ke @ke72ek
1 Followers 6 Following
David Hughes @dchughes62
1K Followers 2K Following Molecular/Evolutionary Geneticist.https://t.co/GYP4q4WwQ8 Tallis to NIN-Metal Machine Music is music Diogenes was right, views own
cb @millslond19
0 Followers 2 Following
GUUINIC FRANÇOISE @GuuinicF
244 Followers 915 Following
Engel el Gozeriano �.. @promielocitico
103 Followers 2K Following Health defender of individual freedom, private property and equality before the law. Against all totalitarianisms. Islam outside Europe
ريم @ReemAlluhibi
492 Followers 367 Following Lifelong learner📖, Respiratory Therapist, Faculty member| phD candidate in respiratory medicine @ucl ✨
Elsie Megan @poemsandparents
16 Followers 224 Following My cathartic and honest (poetic) ramblings about the ups and downs of parenting a child with severe learning disabilities.
Madalina Moldovan @madalina_mld
4 Followers 56 Following Cardiology fellow at Heart Institute Niculae Stancioiu Cluj Napoca/PhD student at UMF Cluj Napoca; Romania
Dr.partha Karmakar @drpartha_dr
70 Followers 223 Following Director Nephrology Fortis hospitals Kolkata & Senior Consultant Nephrologist R N Tagore Hospital, Director Kidney Plus Clinic, Kidney transplant physician
Jimmy Linda @lind54939
25 Followers 184 Following
badtro @btis
55 Followers 671 Following
bianca pizzera @1947bia
3 Followers 22 Following
Cesar Sierra @Sierr325Sierra
439 Followers 3K Following Doctor en derecho~ casacionista penal, mag. Ddhh, esp der penal, ccial, aditivo, docente, conciliador min justicia, certif. Inteligencia y contra inteligencia.
UK Eye Genetics Group @UKEyeGenetics
809 Followers 119 Following UK Eye Genetics Group represents all gene-based topics in the eye #Genetics #Genomics #Education #Research #InheritedEyeDisease #GeneTherapy #GeneticCounselling
Sumac Imilla @sumacimilla87
137 Followers 983 Following
Jennifer Brown @jjunebrown
24K Followers 16K Following Indie author, public health advocate, genetics PhD. Creatively driven, scientifically inspired. Mom of 2 with the rare health condition PKU.
Quimby @KylieThomp77892
1 Followers 978 Following
Iptv @Iptv628224
7 Followers 118 Following
༄✿Sana Queen♛�.. @SanaQueen_PTI
1K Followers 1K Following
Clinic-Zen@ @Cliniczen14
949 Followers 1K Following What the doctor doesn't tell you👇Follow me and hit notifications🔔🫶 #Health solutions through prevention without resorting to medications! Let's go❤️
Helen Chen, PhD @helenc327
361 Followers 626 Following iPSC scientist & organoid engineer for rare neurodevelopmental disease, working on disease modelling & precision medicine @StJudeResearch, @ubc alumnus🇨🇦
Laura Fabbri @Istamina
905 Followers 1K Following Respiratory physician, clinical research fellow, human being, Italian heart. she/her. 🇮🇹🇬🇧🇪🇸🇫🇷 #curePF #ILD #EveryVoiceMatters #PPI
Karen Vincenti @karvincenti
557 Followers 2K Following Director International Affairs and Policy Development Ministry for Health & Active Ageing - Public Health doctor. Opinions my own - retweets not.
SHIB ARMY @ShibaArmy2020
102K Followers 37K Following Crypto currency trading and business expert . #DM for Promotion. $memes token #BSC #BSCgem #ERCgem #MetaVerse #NFT promoter #BSC #DYOR
Owoeye David @davoshalom
771 Followers 2K Following God Lover. Infection Prevention & Control Specialist. Sickle Cell Warrior & Advocate. Author. https://t.co/9z1lvAfJYh…
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
FEDER | Enfermedades .. @FEDER_ONG
39K Followers 8K Following 👉🏻 Somos la esperanza de 3 millones de personas con #enfermedadesraras 🍀 Representamos a 418 organizaciones de pacientes y a 1.546 patologías poco frecuentes
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
RarasNoInvisibles @NoInvisibles
54K Followers 8K Following Hablamos de salud, enfermedades raras, inclusion social y biomedicina. Escribe @Sombradoble Mas Información: [email protected]
Orphanet @Orphanet
6K Followers 625 Following The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
EJP RD - European Joi.. @EJPRareDiseases
4K Followers 2K Following #EJPRD - European Joint Programme on Rare Diseases | RTs shares likes ≠ endorsement
Pedro Lendinez #Enfer.. @pelendinez
5K Followers 2K Following #EnfermedadesRaras #MasVisibles. ¿Te sumas? ¡Juntos llegaremos más lejos! Opiniones personales.
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
22Q11 Ireland @22Q11_Ireland
5K Followers 5K Following Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
Rare Disease UK @rarediseaseuk
22K Followers 2K Following National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
Genetic Alliance UK @GeneticAll_UK
16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
AnnemiekeAartsma-Rus @oligogirl
3K Followers 486 Following Translating science from bench to bedside and from jargon to lay language
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
EpiCARE @EpiCARE_ERN
3K Followers 469 Following European Reference Network for Rare and Complex Epilepsies. We are 50 specialist hospitals in 24 European countries with expertise in epilepsy & research.
Genomics England @GenomicsEngland
30K Followers 2K Following We’re working to enable faster and deeper genomic research, to bring genomic healthcare to all who need it.
ERN ReCONNET 🇪🇺 @ern_reconnet
3K Followers 889 Following 🔬🩺 European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases #ERNReCONNET
JARDIN_Joint-Action @jardin_EU_JA
89 Followers 131 Following JARDIN is created to improve the accessibility of the ERNs for people living with rare diseases or complex conditions in EU member states.
BORDIS @rareconnectbw
40 Followers 112 Following BORDIS is a patient advocacy for rare disease, not for profit organisation in BOTSWANA
Silvia Aguilera @sil_aps
354 Followers 763 Following 🇪🇺 APS ePAG in @ern_reconnet🩸Spanish APS Association vice president (@afosfolipido) 👩🏻🔬PhD in Materials Science
Belgian Presidency of.. @EU2024BE
20K Followers 510 Following 🇧🇪🇪🇺 Belgium holds the Presidency of the Council of the European Union from 1 January to 30 June 2024 | Our official hashtag is #EU2024BE
Claudia Marinetti @MarinettiC
433 Followers 154 Following Director @MHESME tweets&opinions are personal
Roberta Esposito @_robiesposito
445 Followers 1K Following Expt. w/ public health policy & reg | PhDing in Int'l & EU Law. Mental health for all, human rights, the EU | Once a researcher, always a researcher. Views mine
España en la UE @EspanaenUE
28K Followers 757 Following Representación Permanente de España en la Unión Europea
CASK Research UK @CASKResearch
165 Followers 353 Following We are a charitable foundation promoting research into CASK gene mutations and associated neurological conditions in hope of finding therapies and treatments
Rachele Somaschini @rakellyna18
511 Followers 862 Following 🇮🇹 Milano // 28. Rally Driver - Cystic Fibrosis fighter - Testimonial Fondazione Ricerca Fibrosi Cistica - Onlus. [email protected]
EAT @eatfederation
330 Followers 213 Following EAT is a federation of member support groups each associated with the rare congenital condition of Esophageal Atresia (EA).
HTAi @HTAiOrg
5K Followers 824 Following #HTAi is the international society that supports and promotes the development, communication, understanding and use of #HTA around the world.
David Ross @mensraredisease
777 Followers 892 Following MRDMH supports men’s mental health for those suffering with a rare disease. #raredisease #malementalhealth #mentalhealth #rarementalk #mrdcharity
Rareminds @RaremindsUK
983 Followers 2K Following Specialised mental health and wellbeing services for the rare disease community. https://t.co/eVmeTw0aah…
Anne Hugon @Annehugon
136 Followers 265 Following @ERNIthaca @Anddirare @DefiScience @Eurordis @rarediseases #glycogenoses #AFG #polyhandicap #PMID @epags
IPWSO @ipwso
634 Followers 465 Following International Prader-Willi Syndrome Organisation supporting PWS associations, caregivers, professionals, people with PWS and their families worldwide.
Maria Westerlund @MiaMags_W
45 Followers 177 Following Sällsynt diagnosbärare & världsmedborgare med näsa för funktionsrättsfrågor och normkritik. ”Du blir aldrig färdig och det är som det ska” T.Tranströmer
Mental Health Europe @MentalHealthEur
21K Followers 3K Following Largest independent #mentalhealth NGO in Europe 🚀🇪🇺 | We stand up for #humanrights of people with mental ill-health, fight #stigma & advocate for better care
Share4Rare @Share4Rare
2K Followers 999 Following 💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info
Danielle Drachmann @dani_drachmann
743 Followers 3K Following Executive Director at @ketotic_hypo / EHP @healthparl / Patient Representative at @EMA_News
Jelena Malinina @jemalinina
286 Followers 496 Following Data Director @Eurordis. All views are my own.
Screen4Care @Screen4Care
325 Followers 124 Following Accelerating Diagnosis for Rare Disease Patients Through Genetic Newborn Screening and Artificial Intelligence
Kirsten Johnson, FRSA @DrKirstenJ
1K Followers 316 Following Pianist, composer, FRSA, FISM, Chair of Fragile X International, Board member of EURORDIS, member of RDI's Council (she/her) https://t.co/lQMlueCv4a
TAPS Support @tapssupport
2K Followers 2K Following Non-profit dedicated to raising the profile of #TwinAnemiaPolycythemiaSequence and supporting research. #TAPSisReal #TAPS #raredisease. Awareness day: March 3rd
Together for Rare Dis.. @Together4RD
163 Followers 70 Following Together for Rare Diseases is a multi-stakeholder alliance supporting ERNs and industry to collaborate for the benefit of the rare disease community
Facilitate Project @Imi_Facilitate
55 Followers 21 Following FACILITATE is a project aimed to enable the patients' access to their clinical trial data and to manage the data re-use for other research
World Orphan Drug Con.. @OrphanConf
5K Followers 842 Following Get regular updates on the World Orphan Drug Congress! April 23-25, 2024 | Boston Convention & Exhibition Center #WorldOrphanUSA
Irene Norstedt @IreneNorstedt
5K Followers 4K Following Director @EU_Commission 🇪🇺 'People, Heath and Society' Directorate, DG Research & Innovation @EUScienceInnov @HorizonEU #EUHealthResearch #UnionOfEquality
Fédération SOS Glob.. @FMDTsosglobi
416 Followers 312 Following Fédération nationale des assos de malades touchés par la #drépanocytose et la #thalassémie French Federation for Sickle Cell Disease and Thalassemia patients
Grace O'Sullivan MEP @GraceOSllvn
19K Followers 5K Following Climate & social justice activist 🌍. Ecologist 🌱. Surfer 🏄🏼♀️. Mother. Green MEP for Ireland South 🇪🇺. @greenparty_ie spokesperson on the marine.
Alin Mituța @AlinMituta
2K Followers 772 Following Member of the European Parliament @RenewEurope & @PartidulReper 🇷🇴🇪🇺
Marisa Matias @mmatias_
78K Followers 873 Following Deputada AR, Ex-Deputada no Parlamento Europeu. Doutoramento em Sociologia. @BlocodeEsquerda
Ondřej Knotek @KnotekOndrej
2K Followers 689 Following 🇨🇿🇪🇺 Member of the European Parliament. @Reneweurope - ANO🇨🇿
Billy Kelleher MEP @BillyKelleherEU
13K Followers 2K Following @fiannafailparty MEP representing Ireland South. Full member of ECON and FISC and substitute on ENVI @RenewEurope | email [email protected]
Karin Karlsbro @KarinKarlsbro
4K Followers 1K Following Liberalernas toppkandidat i EU-valet 2024. Ledamot av Europaparlamentet.
Radan Kanev @rmkanev
14K Followers 2K Following Bulgarian lawyer, blogger and center-right politician, MEP EPP group.
Clare Daly @ClareDalyMEP
420K Followers 19 Following Member of the European Parliament. Independent. Socialist. https://t.co/4DfRx8G49O https://t.co/MNoRLghszp https://t.co/LKwFpJay31
Rosanna Conte @Rosannaconte_
833 Followers 196 Following Deputata del Parlamento Europeo con la Lega per la circoscrizione Nord-Orientale (Friuli Venezia Giulia, Veneto, Trentino Alto Adige, Emilia Romagna)
Nathalie Colin-Oester.. @ncolin_oesterle
4K Followers 2K Following Députée européenne 🇪🇺 @eppgroup | 📍Élue locale à Metz |VP & porte-parole @LesCentristes_ | Sujets : #santé #pénuries #médicaments #violences #femmes
Sara Cerdas @sara_saracerdas
3K Followers 764 Following Eurodeputada ∣ MEP 2019-2024 @psocialista @PSMadeira @PSnaEuropa @TheProgressives • https://t.co/08ufBNjJAh tiktok@sara_cerdas • MD MSc Public Health
Izaskun Bilbao @IzaskunBilbaoB
7K Followers 501 Following Izaskun Bilbao Barandica nauzue, @eajpnv-ren legebiltzarkidea Europan @RenewEurope taldean. Basque National Party's MEP
Pascal Arimont @pascal_arimont
2K Followers 1K Following MEP @Europarl_DE, German-speak. Community 🇧🇪, #Ostbelgien, @CSPOstbelgien - @EPPGroup, Vice-Chair @EP_Regional, Member @EP_Legal @EP_Industry
Barry Andrews MEP @BarryAndrewsMEP
9K Followers 4K Following Member of the European Parliament for Dublin @FiannaFailParty @RenewEurope
Andris Ameriks @AndrisAmeriks
3K Followers 400 Following MEP from Latvia in the S&D Group; Vice-Chair of the Committee on Transport & Tourism; Committee on Petitions, Member; Vice-Chair of the Central Asian Delegation
Tiemo Wölken 🇪�.. @woelken
53K Followers 717 Following Sozialdemokrat, Nordlicht, Technikfan, Europäer & Mitglied im Europäischen Parlament, @TheProgressives coordinator for Environment, Public Health & Food Safety
Maria Walsh MEP @MariaWalshEU
17K Followers 5K Following Member of European Parliament for Midlands North-West 🇮🇪🇪🇺 | @FineGael & @EPPGroup | Rose of Tralee 2014 🌹 | Instagram & Facebook @mariawalsheu
Mick Wallace @wallacemick
375K Followers 933 Following Builder. Breaker. Member of the European Parliament. https://t.co/QbptCVDoOG
Hilde Vautmans @hildevautmans
7K Followers 2K Following 🇪🇺MEP: Foreign affairs coordinator @RenewEurope I Human rights | Women’s rights | Children's rights | Agriculture. 🇧🇪 1e schepen van Sint-Truiden @openvld.
📢Don't miss the next @eurordis Healthcare Webinar series! Will be held online next Monday 29th of April at 14:00 CET. ▶️"Approaches to the Evaluation of Evidence for Rare Disease and Complex Conditions Guidelines". eurobloodnet.eu/news/578/don-t… #ERNeu #ERNs #HealthUnion
Avril Daly, president and Virginie Bros-Facer, CEO at @eurordis discuss how we find ourselves at a pivotal juncture in the fight against rare diseases. With numerous elections in the offing, we stand before an opportunity to shape the future. bit.ly/WomenInRARE-Eu… #WomenInRARE
Excited to announce the next speakers for our upcoming #CareCoordination webinar, Dr. Rita Francisco and Dr. Jessie Dubief from @eurordis, who will be speaking about the Rare Barometer Programme and H-Care project for Rare Diseases. Register here: ucd-ie.zoom.us/webinar/regist…… ✨🧬
@eurordis Webinar : Approaches to the Evaluation of Evidence for Rare Disease and Complex Conditions Guidelines. Already next Monday 29th April info & Registration: erica-rd.eu/event/approach…
@eurordis Webinar: Approaches to the Evaluation of Evidence for Rare Disease and Complex Conditions Guidelines. Already next Monday 29th April info & Registration: erica-rd.eu/event/approach…
🚀Are you ready for the 12th edition of the #ECRD2024? This event is coordinated by @eurordis & co-organized by @Orphanet 📆15 & 16 May and fully hybrid for the first time! Check out what's on the programme and register now! bit.ly/49Lftek #ERNeu #ERNs #HealthUnion
Read more from our Women in RARE at bit.ly/WomenInRARE
Women in Rare 👏 Catch our CEO @VirginieBF31 and President @avrilbdaly in the latest edition of @RareRevolutionM breaking down why this is a pivotal moment for our community and what we are doing about it!✊ Page 81 ➡️ bit.ly/WomenInRARE-Eu…
🤝 @ern_reconnet is an associated partner of the #ECRD Conference organized by @eurordis May 15th-16th. 😃 Will you be join us? ❓Explore all the opportunities this event will provide you, by clicking here👉 bit.ly/443b8Sf Look forward to meeting you there!
Thanks to @RareRevolution for including me & @VirginieBF31 CEO @eurordis perspective on the #raredisease policy landscape in #Europe opportunities & challenges. Also the particular issues faced by women in accessing diagnosis & care.
Women in Rare 👏 Catch our CEO @VirginieBF31 and President @avrilbdaly in the latest edition of @RareRevolutionM breaking down why this is a pivotal moment for our community and what we are doing about it!✊ Page 81 ➡️ bit.ly/WomenInRARE-Eu…
We're very proud to be partnering with @eurordis on the upcoming ECRD on 15 & 16 May 2024! Register now! Members of our network get 15% off with the promo code: ECRD24_15%_Partners Get your tickets now! #ECRD2024 invt.io/1txb3f5jnhy
📢We're very proud to be partnering with @eurordis on the upcoming ECRD on 15 & 16 May 2024, and it is fully hybrid for the first time! 💡This is an opportunity to shape goal-driven #RareDisease policies of the future! 🔗Register now! invt.io/1exb18c34xf
📣#ActRare2024: chiediamo all'UE #diagnosi precoce, più veloce e più accurata! In vista delle #elezionieuropee 🗳️, abbiamo lanciato con @eurordis un Manifesto con 8 raccomandazioni per costruire un’Unione sanitaria europea inclusiva. ⬇️Scopri tutto uniamo.org/da-uniamo/actr…
EATRIS is excited to be an Associate Partner of #ECRD2024 - the European Conference for #RareDiseases & Orphan Products taking place in Brussels on 15-16 May 2024 & online. Hosted by the patient-driven rare disease alliance @eurordis. 👉 More here: eatris.eu/events/12th-eu…
Happy to announce that we are now a member of @eurordis - looking forward to improving the European healthcare landscape for individuals living with alpha-1 and other rare diseases in partnership with EURORDIS and its many members!
🔬 Welcoming progress means welcoming our shared humanity. With more than 36 million individuals affected by rare diseases in Europe alone, it's time for us to stand together to fight for better healthcare. ➡️Let's ensure public support for research and innovation, complementing…
We urge the EU to coordinate a unified approach for equal opportunity to diagnosis: go.eurordis.org/iBma62 🧑⚕️Promote collaboration among healthcare providers 👶Implement EU newborn screening 🧑💻Support advanced diagnostic technologies 🤝Share best practices
📣#ActRare2024: chiediamo all'#UE un Piano d’Azione Europeo per le #malattierare! In vista delle #elezionieuropee, abbiamo lanciato un Manifesto con 8 raccomandazioni per costruire un’Unione sanitaria europea inclusiva. 👇 Scopri tutto uniamo.org/da-uniamo/actr…
📣 Vuoi essere il megafono della #comunità rara e far sì che le #malattierare siano una priorità dell'agenda politica europea per i prossimi 5 anni!? 🇪🇺 Insieme a @eurordis abbiamo redatto il Manifesto #ActRare2024 e lanciato un appello ai partiti: uniamo.org/da-uniamo/actr…
🗞️ A new edition of OrphaNews International is available! Read now for all the latest news from the rare disease community, including a look back on Rare Disease Day 2024, the launch of @eurordis #ActRare2024 campaign, and more ➡️ buff.ly/3x5Jp70 #raredisease #orphanet
#Elezioni europee, @uniamofimronlus lancia il manifesto #ActRare2024: 8 raccomandazioni fondamentali per costruire un’Unione sanitaria europea inclusiva e una società più equa e attenta ai bisogni dei più fragili ⤵️ tinyurl.com/2ypaaubm
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