Claudio Carta
@claudiocarta_4
Senior #Researcher Italian National Centre for #RareDiseases @istsupsan Rome; @elixir_it LTeC; Co-founder RD @GOFAIRofficial; @irdirc ISC member. My own tweets
ID: 1232058181548986368
24-02-2020 21:44:41
998 Tweet
189 Followers
37 Following
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.
uniamomalattierare
@uniamofimronlus
Con oltre 200 realtà federate, per una migliore qualità di vita e per la tutela dei diritti delle persone con #malattierare. Alleanza nazionale di @Eurordis.
ELIXIR Europe
@elixireurope
Research infrastructure bringing together Europe's #bioinformatics resources. Store, analyse, share, & reuse data
Eva Bermejo-Sánchez, PhD
@evabs14
Investigación sobre #EnfermedadesRaras & #DefectosCongénitos, sus causas y prevención / Research on #RareDiseases & #BirthDefects, their causes & prevention
CDKL5 - IFCR
@cdkl5_ifcr
501(c)(3) dedicated to advocacy, research & cures for #CDKL5 Deficiency Disorder - a Developmental & Epileptic Encephalopathy (DEE). Formerly used @CDKL5_USA
Orphanet
@orphanet
The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm
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
Domenica Taruscio
@dtaruscio
MD, Former Director of the National Centre for Rare Diseases @istsupsan . TW are personal views. RT≠endorsement facebook.com/domenica.tarus…
Ministero della Salute
@ministerosalute
Profilo ufficiale del Ministero della Salute
Istituto Superiore di Sanità
@istsupsan
Account ufficiale - Principale centro di ricerca, controllo e consulenza tecnico-scientifica in materia di sanità pubblica in Italia
Hélène Le Borgne
@helenelborgne
European, bretonne. Public health & research at EU level, rare diseases, transplantation. Youth & Sports (RTs/follows ≠ endorsements, own views).
IRDiRC
@irdirc
#IRDiRC is a consortium of #RareDisease #research funding agencies n stakeholders. RTs shares likes ≠ endorsement. Account managed by IRDiRC Scient. Secretariat
Telefono Verde Malattie Rare
@tvmr_cnmr
Il Telefono Verde Malattie Rare (TVMR) è una helpline dedicata alle malattie rare, istituita presso il @cnmr_ISS, risponde al n. 800.89.69.49.
Udninternational
@udniss
The Undiagnosed diseases network international (UDNI) was established in 2014, (UDNI); it was founded by five participants countries including Italy.
European Reference Network on Rare Bone Diseases
@ern_bond
Share. Care. Cure.
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.
Marta Mosca
@martamartamosca
Professor of Rheumatology, ERN ReCONNET Coordinator, Head of the Rheumatology Unit of Pisa, University of Pisa #SLE #connectivetissuediseases #rarediseases
Rosaria (Sara) Talarico
@saratalarico2
MD, PhD. Rheumatologist at the Azienda Ospedaliero Universitaria Pisana. ERN ReCONNET Scientific Coordinator. Working on Rare and Complex Diseases, Behçet.
ICORD
@icord_rare
ICORD is an International Society for all individuals actively involved in rare diseases and/or orphan drugs
Giuseppe Turchetti
@gturchetti_it
PhD, Fulbright Scholar, Professor of Economics and Management @ScuolaSantAnna. Working on: #rarediseases, #ERN, #healtheconomics, #HTA, #consumerneuroscience
ERICA
@erica_rd_eu
The European Rare Disease Research Coordination and Support Action
Michela Onali
@michi_onali
Cross-cultural mediator, #GNEMyopathy and #RareDisease advocate. I dive into what is #Rare, unexpected and new to me. Share and be #FAIR
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.
ELIXIR Italy
@elixir_it
Italian Node of @ELIXIREurope, research infrastructure for #bioinformatics resources in Europe. ❗️Check out the covid19dataportal.it
DrPasEle
@drpas84ele
Communication | Advocacy | Policy | #Neuroscience #PhD | Founder n President of #RareSpecialPowers | #rarediseases | #pinksocks | Own views
Wanda
@wandalattanzi
Med geneticist studying (and moderately tweeting on) #bone biology, #genetics, craniosynostosis, #rarediseases, #stemcells & regeneration, feeding my curiosity.
VASCERN
@vascern
Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases
ERN EuroBloodNet
@erneurobloodnet
ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases
Manuel Posada
@mposada53
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
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
GO FAIR
@gofairofficial
A bottom-up international approach for the practical implementation of the European Open Science Cloud (EOSC). RT ≠ endorsement. #FAIRdata
Solve-RD
@solve_rd
Solve-RD is a H2020 funded flagship EU project. We will solve large numbers of rare diseases, for which a molecular cause is not known yet.
@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
Leslie Matalonga
@lesliematalonga