"EC Public Health Programme" projekt MMVCM18549
MMVCM18549 "Orfaneti võrgustik (1.06.2018−31.12.2020)", Vallo Tillmann, Tartu Ülikool, Meditsiiniteaduste valdkond, kliinilise meditsiini instituut.
MMVCM18549
Orfaneti võrgustik
Orphanet Network
ONW
1.06.2018
31.12.2020
Teadus- ja arendusprojekt
EC Public Health Programme
ETIS klassifikaatorAlamvaldkondCERCS klassifikaatorFrascati Manual’i klassifikaatorProtsent
3. Terviseuuringud3.7. Kliiniline meditsiinB660 Pediaatria 3.2 Kliiniline meditsiin100,0
AsutusRiikTüüp
Euroopa Komisjon
PerioodSumma
01.06.2018−31.12.202015 000,00 EUR
15 000,00 EUR

Haruldaste haiguste võrgustiku Oprhanet tööshoidmine ja uuendamine Eestit puudutavate andmetega. Konkreetseid eesmärke vaata eesmärke ingliskeelses annotatsioonis.
Rare diseases (RD) have been considered a challenge for Europe, for they have been identified as one of the paradigmatic fields in which actions conducted at the European level constitute the adequate response to their specific problems: poor recognition leading to diagnostic delay and inappropriate management including adapted social services, poor health outcomes, social burden, limited knowledge on natural history and pathophysiology leading to an insufficient development of new therapies. To provide the RD community with interoperability tools, in particular around an inventory of RD, to allow for semantic interoperability between countries and between domains (health, research) 2. To provide high-quality information on RD, in particular through an encyclopedia in several languages, 3. To provide a directory of expert services in order to help patients, physicians and stakeholders finding the expertise on a particular disease in Europe and beyond, and to produce data needed to support policy actions. 4. To further develop and sustain Orphanet as the reference knowledge base on RD, by establishing and consolidating collaboration within the Orphanet pan-European network and with European Reference Networks (ERNs) for the production, improvement and dissemination of knowledge on rare diseases. It will allow for the creation of a consistent expertise ecosystem for rare diseases in Europe.
KirjeldusProtsent
Rakendusuuring100,0
AsutusRollRiikTüüpKommentaar
Institut national de la santé et de la recherche médicale (INSERM)koordinaatorPrantsuse VabariikTA asutus
ACADEMISCH ZIEKENHUIS LEIDENpartnerMadalmaade Kuningriik
BULGARIAN ASSOCIATION FOR PROMOTION OF EDUCATION AND SCIENCEpartnerBulgaaria Vabariik
CONSORCIO CENTRO DE INVESTIGACION BIOMEDICA EN RED M.P.partnerHispaania Kuningriik
Department of HealthpartnerSuurbritannia ja Põhja-Iiri Ühendkuningriik
EMBERI EROFORRASOK MINISZTERIUMApartnerUngari Vabariik
HEALTH SERVICE EXECUTIVE HSEpartnerIirimaa
INSTITUT ZA MOLEKULARNU GENETIKU I GENETICKO INZENJERSTVOpartnerSerbia
INSTYTUT POMNIK CENTRUM ZDROWIA DZIECKApartnerPoola Vabariik
KLINIKA ZA DJECJE BOLESTI ZAGREBpartnerHorvaatia Vabariik
MEDIZINISCHE HOCHSCHULE HANNOVERpartnerSaksamaa Liitvabariikülikool
MEDIZINISCHE UNIVERSITAET WIENpartnerAustria Vabariikülikool
MINISTERIO DA SAUDE - REPUBLICA PORTUGUESApartnerPortugali Vabariik
Ministry for Health - Government of MaltapartnerMalta Vabariik
OSLO UNIVERSITETSSYKEHUS HFpartnerNorra Kuningriik
OSPEDALE PEDIATRICO BAMBINO GESUpartnerItaalia Vabariik
RINNEKOTI SAATIOpartnerSoome Vabariik
SCIENSANOpartnerBelgia KuningriikTA asutus
STOCKHOLMS LANS LANDSTINGpartnerRootsi Kuningriik
UNIVERSITATEA DE MEDICINA SI FARMACIE GRIGORE T.POPA IASIpartnerRumeenia
UNIVERZITA KARLOVApartnerTšehhi Vabariikülikool
UNIVERZITETNI KLINICNI CENTER LJUBLJANApartnerSloveenia Vabariik
VIESOJI ISTAIGA VILNIAUS UNIVERSITETO LIGONINE SANTAROS KLINIKOSpartnerLeedu Vabariik