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.
ID: 26993786
http://www.eurordis.org 27-03-2009 12:29:29
8,8K Tweet
31,31K Followers
1,1K Following
FEDER | Enfermedades Raras
@feder_ong
👉🏻 Somos la esperanza de 3 millones de personas con #enfermedadesraras 🍀 Representamos a 422 organizaciones de pacientes y a 1.546 patologías poco frecuentes
Rare Disease Day
@rarediseaseday
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Radan Kanev
@rmkanev
Bulgarian lawyer, blogger and center-right politician, MEP EPP group.
National Organization for Rare Disorders (NORD)
@rarediseases
National Organization for Rare Disorders (#NORD) is the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay.
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
EveryLife Foundation
@everylifeorg
Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Silvia Aguilera
@sil_aps
🇪🇺 APS ePAG in @ern_reconnet🩸Spanish APS Association vice president (@afosfolipido) 👩🏻🔬PhD in Materials Science
World Orphan Drug Congress USA
@orphanconf
Get regular updates on #WorldOrphanUSA! April 22-24, 2025 | Boston Convention & Exhibition Center 👉 Register here: terrapinn.com/bookwodc_tw
Jordi Cañas
@jordi_canyas
Etiam si omnes, ego non
Mental Health Europe
@mentalhealtheur
Largest independent #mentalhealth NGO in Europe 🚀🇪🇺 | We stand up for #humanrights, fight stigma & advocate for better care Home of #EuropeanMentalHealthWeek
José Gusmão
@joseggusmao
Economista e eurodeputado do Bloco de Esquerda
Rare Disease UK
@rarediseaseuk
National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
Nathalie Colin-Oesterlé
@ncolin_oesterle
Députée 3è circonscription de la Moselle | 📍Élue locale à Metz | VP & porte-parole @LesCentristes_
Rachele Somaschini
@rakellyna18
🇮🇹 Milano // 28. Rally Driver - Cystic Fibrosis fighter - Testimonial Fondazione Ricerca Fibrosi Cistica - Onlus. [email protected]
Clare Daly
@claredalyirl
Independent. Socialist. Former Member of European Parliament.
Genetic Alliance UK
@geneticall_uk
National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign Rare Disease UK and support network @SWAN_UK.
Beacon for Rare Diseases
@rarebeacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Billy Kelleher MEP
@billykellehereu
@fiannafailparty MEP Ireland South; First Vice President @reneweurope; Republican, Progressive and Liberal; [email protected]
Karin Karlsbro
@karinkarlsbro
Member of European Parliament 🇸🇪🇪🇺 Liberal. Standing rapporteur on Ukraine in the International Trade Committee 🇺🇦
Pedro Lendinez #EnfermedadesRaras #MasVisibles
@pelendinez
#EnfermedadesRaras #MasVisibles. ¿Te sumas? ¡Juntos llegaremos más lejos! Opiniones personales.
Sara Cerdas @saracerdas.bsky.social
@sara_saracerdas
antiga Eurodeputada ∣ former MEP 2019-2024 @psocialista @PSMadeira @TheProgressives • instagram.com/sara_cerdas • MD MSc Public Health
Belgium in the EU
@belgiumineu
🇧🇪🇪🇺 Official account of the Permanent Representation of Belgium to the European Union
España en la UE
@espanaenue
Representación Permanente de España en la Unión Europea
HTAi
@htaiorg
We're moving over to Bluesky! Follow us: @htaiorg.bsky.social
Maria Westerlund
@miamags_w
Sällsynt diagnosbärare & världsmedborgare med näsa för funktionsrättsfrågor och normkritik. ”Du blir aldrig färdig och det är som det ska” T.Tranströmer
Stine Bosse / Christine
@bossestine
Member of the European-Parlament Board Professionel exp from GER, DK, UK, SWE and North Atlantic
RarasNoInvisibles
@noinvisibles
Hablamos de salud, enfermedades raras, inclusion social y biomedicina. Escribe @Sombradoble Mas Información: [email protected]
EAT
@eatfederation
EAT is a federation of member support groups each associated with the rare congenital condition of Esophageal Atresia (EA).
Genomics England
@genomicsengland
We’re working to enable faster and deeper genomic research, to bring genomic healthcare to all who need it.
22Q11 Ireland
@22q11_ireland
Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
Izaskun Bilbao
@izaskunbilbaob
Izaskun Bilbao Barandica nauzue, @eajpnv-ren legebiltzarkidea ohia Europan @RenewEurope taldean. Basque National Party's former MEP
IPWSO
@ipwso
International Prader-Willi Syndrome Organisation supporting PWS associations, caregivers, professionals, people with PWS and their families worldwide.
Grace O'Sullivan
@graceosllvn
Climate & social justice activist 🌍. Ecologist 🌱. Surfer 🏄🏼♀️. Mother. Green MEP for Ireland South 19-24 🇪🇺. @greenparty_ie spokesperson on the marine.
MedicsforRareDisease
@medicsforrare
Excellence in rare disease medical training
Fédération SOS Globi
@fmdtsosglobi
Fédération nationale des assos de malades touchés par la #drépanocytose et la #thalassémie French Federation for Sickle Cell Disease and Thalassemia patients
EESC PRESS
@eesc_press
📰 News and stories from @EU_EESC - the EU body representing organised #EUcivilsociety 📧 [email protected]
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
Kirsten Johnson, FRSA
@drkirstenj
Pianist, composer, FRSA, FISM, Chair of Fragile X International, Board member of EURORDIS, Chair of RDI's Council (she/her) linktr.ee/kjohnsonmusic
Pascal Arimont
@pascal_arimont
MEP @Europarl_DE, German-speak. Community 🇧🇪, #Ostbelgien, @CSPOstbelgien - @EPPGroup, Vice-Chair @EP_Regional, Member @EP_Legal @EP_Industry
Claudia Marinetti
@marinettic
Director @MHESME tweets&opinions are personal
TAPS Support
@tapssupport
Non-profit dedicated to raising the profile of #TwinAnemiaPolycythemiaSequence and supporting research. #TAPSisReal #TAPS #raredisease. Awareness day: March 3rd
ERDERA
@erdera_org
The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
Rosanna Conte
@rosannaconte_
Deputata del Parlamento Europeo con la Lega per la circoscrizione Nord-Orientale (Friuli Venezia Giulia, Veneto, Trentino Alto Adige, Emilia Romagna)
Ondřej Knotek
@knotekondrej
Člen hnutí ANO 🇨🇿 Member of the European Parliament
Irene Norstedt
@irenenorstedt
Director @EU_Commission 🇪🇺 'People: Health & Society' Directorate, DG Research & Innovation @EUScienceInnov @HorizonEU #EUHealthResearch #UnionOfEquality
Danielle Drachmann
@dani_drachmann
Executive Director at @ketotic_hypo / EHP @healthparl / Patient Representative at @EMA_News
David Ross
@mensraredisease
MRDMH supports men’s mental health for those suffering with a rare disease. #raredisease #malementalhealth #mentalhealth #rarementalk #mrdcharity
SANT Committee Press
@ep_publichealth
European Parliament Committee on Public Health. Managed by EP press service. RTs ≠ endorsements.
Rareminds
@raremindsuk
Specialised mental health and wellbeing services for the rare disease community. bit.ly/rarementalheal…
Screen4Care
@screen4care
Accelerating Diagnosis for Rare Disease Patients Through Genetic Newborn Screening and Artificial Intelligence
Facilitate Project
@imi_facilitate
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
Together for Rare Diseases
@together4rd
Together for Rare Diseases is a multi-stakeholder alliance supporting ERNs and industry to collaborate for the benefit of the rare disease community
REMEDi4ALL
@remedi4all
The European Platform for Medicines Repurposing
CASK Research UK
@caskresearch
We are a charitable foundation promoting research into CASK gene mutations and associated neurological conditions in hope of finding therapies and treatments
JARDIN Joint Action
@jardin_eu_ja
JARDIN is created to improve the accessibility of the ERNs for people living with rare diseases or complex conditions in EU member states.
VirginieBrosF
@virginiebrosf
CEO of @eurordis.
Jelena Malinina
@jemalinina
Data Director @Eurordis. All views are my own.
AnnemiekeAartsma-Rus
@oligogirl
Translating science from bench to bedside and from jargon to lay language
Oliver Varhelyi
@olivervarhelyi
Commissioner for Health and Animal Welfare
Anne Hugon
@annehugon
@ERNIthaca @Anddirare @DefiScience @Eurordis @rarediseases #glycogenoses #AFG #polyhandicap #PMID @epags
BORDIS
@rareconnectbw
BORDIS is a patient advocacy for rare disease, not for profit organisation in BOTSWANA
RARE Revolution Magazine
@rarerevolutionm
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Alin Mituța
@alinmituta
I believe in Europe. Former MEP 🇷🇴🇪🇺
ERN ReCONNET 🇪🇺
@ern_reconnet
🔬🩺 European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases #ERNReCONNET
Circleboom
@circleboom
Boom your Social Circle! We create intuitive and easy-to-use social media products for brands, SMBs and users to grow and strengthen their social network.
EpiCARE
@epicare_ern
European Reference Network for Rare and Complex Epilepsies. We are 50 specialist hospitals in 24 European countries with expertise in epilepsy & research.
Share4Rare
@share4rare
💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info
Ekaterina Zaharieva
@ezaharievaeu
EU Commissioner for Startups, Research and Innovation
Ayça Şahin
@msgeneticist
Koç University | Molecular Biology and Genetics BSc🎓 and now doing PhD in Neuroscience | SMA warrior 💪 and doing SMA research 🧬 | Future geneticist
@ERN_RND 🧠
@ern_rnd
European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients. Free webinars: bit.ly/33mMY4C