OD4RD Project
@orphacodes
The OD4RD project builds on Orphanet's specific expertise and on its network to support the implementation of ORPHAcodes in health systems in a standardisez way
ID: 1439934271158956035
http://www.od4rd.eu 20-09-2021 12:48:27
51 Tweet
27 Followers
43 Following
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
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.
Creer Imserso
@centrocreer
Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras y sus Familias (CREER) del Imserso
European Commission
@eu_commission
News and information from the European Commission. Social media and data protection policy: europa.eu/!MnfFmT
ELIXIR Europe
@elixireurope
Research infrastructure bringing together Europe's #bioinformatics resources. Store, analyse, share, & reuse data
Piera Smeriglio
@pierasmeriglio
Researcher in molecular biology - epigenetics
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 👤🐾🌱
Maladies Rares Info Services
@maladierareinfo
Service d'information, d'orientation et de soutien spécialisé dans les maladies rares et l'errance diagnostique associée - n° vert 0800 40 40 43
Fondation Maladies Rares
@fdmaladiesrares
Fondation de coopération scientifique | Foundation For Rare Diseases - Foundation for scientific cooperation
Orphanet
@orphanet
The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm
RD-Connect
@connectrd
An integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research
MedicsforRareDisease
@medicsforrare
Excellence in rare disease medical training
BNDMR Maladies Rares
@bndmr
Banque Nationale de Données Maladies Rares, un projet du Plan national maladies rares, financé par la Direction Générale de l'Offre de Soins.
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
Alberto M Pereira
@albertompereir1
endocrinologist, professor of medicine. Fascinated by the long-term consequences of stress and stress hormones
ERN-LUNG
@ernlung
Foresight in Rare Disease Policy
@rare2030
Preparing a better future for people living with rare diseases. For more info [email protected]
ERN GUARD-Heart
@ernguardheart
ERN GUARD-Heart is part of the European Reference Networks for rare or low-prevalence disease and focuses on rare and complex diseases of the heart. @AMC_nl
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.
ERN CRANIO
@cranio_ern
The European Reference Network for rare and/or complex craniofacial anomalies and ENT disorders
ERNICA
@ernica_ern
The European Reference Network for Rare Inherited Congenital Anomalies
Orphanet Italia
@orphanetit
Il portale delle malattie rare e dei farmaci orfani
Debby Lambert
@debbylambert14
Genetic counsellor. Prenatal GC and research of genetic professional issues. Biking everywhere
ERICA
@erica_rd_eu
The European Rare Disease Research Coordination and Support Action
Natasha Barr
@caretently
Creating content with CARE for the rare disease community. Medical writing, translation and content creation services. Formerly worked at @vascern + @orphanet
FIMATHO
@filierefimatho
Filière de santé #maladiesrares - FIMATHO coordonne les actions des acteurs impliqués dans la prise en charge des maladies rares abdomino-thoraciques
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 RARE LIVER
@ern_rare_liver
A major opportunity for better treatment for patients with rare liver disease in Europe
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
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.
ERN-ITHACA
@ernithaca
European Reference Network on congenital malformations and rare intellectual disability (ERN-ITHACA).
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
ERN-EYE
@erneyeeu
ern-eye.eu - ERN-EYE is a European Reference Network dedicated to Rare Eye Diseases.
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