Yann Le Cam
@yann_eurordis
CEO @eurordis, #raredisease #patient advocate. Member of @rarediseasesint council. Tweets are my own.
ID: 966574250
http://www.eurordis.org/ 23-11-2012 18:08:53
372 Tweet
1,1K Followers
253 Following
Harvard Business Review
@harvardbiz
The best ideas in business and management to help people, organizations, and economies work better.
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
Carlos Moedas
@moedas
👤 Presidente da Câmara Municipal de Lisboa | Mayor of Lisbon | Maire de Lisbonne
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.
Elon Musk
@elonmusk
sean hepburn ferrer
@seanferrer
Bill Gates
@billgates
Sharing things I'm learning through my foundation work and other interests.
Diah Satyani Saminarsih
@diahsaminarsih
a mother, an optimist, a dancer.Founder & CEO @CISDI_ID @PencerahNusa. ISF-Asia Fellow 2022, Rockefeller Fellow 2023. -all views personal-
EUnetHTA
@eunethta
Official account for the European Network for Health Technology Assessment. Retweets are not endorsements. The project will end on the 16/09/2023.
Raquel Castro
@castrorakel
Social Policy and Initiatives Director @EURORDIS Advocating for and empowering people living with a Rare Disease and their families. Views are my own.
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.
Ines Hernando
@inesernando
European Reference Networks and Healthcare Director @eurordis. Views expressed are my own |
EU Medicines Agency
@ema_news
Latest news from the European Medicines Agency, the European Union agency responsible for the evaluation and supervision of medicines. RTs ≠ endorsement.
European Commission
@eu_commission
News and information from the European Commission. Social media and data protection policy: europa.eu/!MnfFmT
The Patient-Centered Outcomes Research Institute
@pcori
PCORI funds patient-centered comparative clinical effectiveness research (CER). Links, RTs, favorite ≠ endorsements/advice.
NCD Alliance
@ncdalliance
Accelerating action on noncommunicable diseases (#NCDs) to promote health, protect rights and save lives. #ActOnNCDs
RareConnect
@rareconnect
🌐Connecting #raredisease patients globally at rareconnect.org. 💻Website help at @RareConnectSup.
Nili Majumder
@nilimajumder
Advocacy 4 Women Empowerment,Gender Equality, clean environment. Former VSO volunteer.
Emma
@burkittwright
Clinical geneticist, hoarder, wannabe cat lady. More moderate in politics than most things, but hard-line Pro-European.
U.S. Surgeon General
@surgeon_general
Official X account for the U.S. Surgeon General. Tweets before 01/20/25 are from prior federal officials. Privacy: hhs.gov/privacy.html
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.
EU One Health
@eu_health
The official account of @EU_Commission Directorate-General for Health & Food Safety (SANTE): #OneHealth: connecting health of humans, animals & plants 👤🐾🌱
Rare Disease Team
@raredxresearch
A Canadian research team focusing on rare disease policy.
Rémy Choquet
@remychoquet
Chief Evidence & Data Officer @roche_france PhD in Public health and biomedical data science. #rwe #rwd #ehealth #innovation #ai #data. Tweets are my own.
RD-Connect
@connectrd
An integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research
Denise Scots-Knight
@scotsknight2
CEO/founder Mereo Biopharma plc focussed on patients with rare diseases. Non exec director and fitness junkie
Eibhlin Mulroe 🌈
@eibhlinmulroe
Working in health research, living for time on the water! Moving to Bluesky, hope all find me. I love a good debate in person only! All views here are my own ;)
Ofelia CAZACU
@cazacuofelia
Roumaine vivant en France 🇷🇴🇫🇷
Rebecca T. Skarberg
@rskarberg
Disability advocate, social worker, adviser on rare disorders, wheely, fragile yet feisty, OI, cat lover, perfect wife, quilter, chocoholic +++
Rare Disease Policy
@rarediseaseseu
@RareDiseasesEU is currently managed by Victoria Hedley, RD Policy Manager @ Newcastle University (formerly account 4 RD-ACTION & EUCERD JA). Views now my own
Natasha Azzopardi Muscat
@natasha_azzmus
Medical doctor - Director of Country Health Policies & Systems @WHO_Europe. Mum of 3 lovely independent children. Formerly EUPHA President & CMO of Malta.
Sofia Douzgou Houge
@sofiadouzgou
Senior Consultant in Medical Genetics @haukeland_no Executive Board member @ernithaca Editor @ClinDysmo
Lilia
@liliahassaine
EUROPLAN project
@europlanproject
EU Project for Rare Diseases National Plans Development (#europlanproject) coordinated by @cnmr_ISS; @DTaruscio; Join: @RAREBestP @RARE_Journal
Alexis Dutertre 🇫🇷🇪🇺
@alexisdutertre
Conseiller #Europe @Elysee @EmmanuelMacron. Auparavant ambassadeur 🇫🇷 à Prague 🇨🇿 et COREPER 🇪🇺 aficionado. Compte personnel.
ORDIndia
@ordindia
National rare disease advocacy, 24/7 patients hotline, engage Hospitals, Physicians, Pharma/Biotech/Dx industry, Orphan drugs act for India, Global Alliances
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
IRDiRC
@irdirc
#IRDiRC is a consortium of #RareDisease #research funding agencies n stakeholders. RTs shares likes ≠ endorsement. Account managed by IRDiRC Scient. Secretariat
Virginie Hivert
@virginiehivert
Therapeutic Development Director @eurordis
NeuroSphinx
@neurosphinx
Filière #maladiesrares : acteurs la prise en charge des malformations pelviennes&médullaires rares avec atteintes sphinctériennes et/ou neurologiques
ERN-LUNG
@ernlung
Foresight in Rare Disease Policy
@rare2030
Preparing a better future for people living with rare diseases. For more info [email protected]
TouzeBioParis
@touzebioparis
🔞Touzes géantes mensuelles 🔞 0 drog + tous à poil 1 jeudi, 2 événements: Paris au @secteurx_paris + Montpellier @TouzeBioMtp 1 samedi au @redzonebarparis
DE CARLI Paola
@paodecarli
Directrice Scientifique @Vaincrelamuco #research #cysticfibrosis #rarediseases #patients #accestotreatments #nofakenews #innovation 🇮🇹🇫🇷🇪🇺
AnnemiekeAartsma-Rus
@oligogirl
Translating science from bench to bedside and from jargon to lay language
Johan Prevot
@johanprevot
Executive Director @ IPOPI All views strictly personal.
Geneva Global Health Hub (G2H2)
@g2h2_geneva
Geneva Global Health Hub: We are building a strong civil society space in Geneva for more democratic global health. #healthgovernance #pandemictreaty #WHA76
VASCERN
@vascern
Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases
ern euro_nmd
@euro_nmd
Building bridges and breaking barriers in rare neuromuscular diseases.
ERN EuroBloodNet
@erneurobloodnet
ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases
_ERNRITA
@_ernrita
ERN for Rare Immunodeficiency, autoinflammatory, autoimmune and paediatric rheumatology Diseases - For all patients with rare immune disorders in Europe
Maïa
@maialecam
Étudiante en Communication (Celsa) & Chargée de communication (Wefound)
EHC_Haemophilia
@ehc_haemophilia
The European Haemophilia Consortium aims to improve the quality of life of people with haemophilia and other rare bleeding disorders throughout Europe.
ERN TransplantChild
@transplantchild
European Reference Network on transplantation in children
RareEndoERN
@rareendoern
#EuropeanReferenceNetwork Connecting care in the EU for patients with rare endocrine conditions.
ERN ReCONNET 🇪🇺
@ern_reconnet
🔬🩺 European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases #ERNReCONNET
ERN eUROGEN
@ern_eurogen
Improving diagnosis, treatment & care for rare uro-recto-genital diseases & complex conditions needing highly specialised surgery. Funded by the EU.
EURACAN
@ern_euracan
#EURACAN is the #ERN for #rare adult solid #cancers: 1 of the 24 #EuropeanReferenceNetworks working on a range of thematic issues. 🔗 linktr.ee/euracan
ERN-ITHACA
@ernithaca
European Reference Network on congenital malformations and rare intellectual disability (ERN-ITHACA).
Kay Parkinson
@parkinson_kay
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.
MetabERN
@metab_ern
The European Reference Network for Hereditary Metabolic Diseases. A better future for Rare Inherited Metabolic Disease patients. RT ≠ Endorsement. #Together
Thomas Morel
@drthomasmorel
Researcher with core interests in: #rarediseases, patient-focused drug development, #patientengagement, #PatientReportedOutcomes and COAs.
ERN-EYE
@erneyeeu
ern-eye.eu - ERN-EYE is a European Reference Network dedicated to Rare Eye Diseases.
matt johnson
@mattbolzjohn
Healthcare & ERN Advisor, EURORDIS
@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