
- POČETNA
- O NAMA
- AKTUALNO
- MEĐUNARODNE ASOCIJACIJE
- KONTAKT
- POVEZNICE
- PRAVA PACIJENATA
- ORGANIZACIJE
- Hrvatsko društvo za hematologiju hrvatskog liječničkog zbora (HRDH)
- Hrvatska kooperativna udruga za hematološke bolesti – KROHEM
- The European Hematology Association (EHA)
- The European Group for Blood and Marrow Transplantation (EBMT)
- The European Organisation for Research and Treatment of Cancer (EORTC)
- European LeukemiaNet
- The American Society of Hematology (ASH)
- The American Society for Blood and Marrow Transplantation (ASBMT)
- The International Society of Hematology (ISH)
- The American Society of Pediatric Hematology/Oncology (ASPHO)
- The Society for Hematology and Stem Cells (ISEH)
- The International Myeloma Foundation (IMF)
- The Society for Immunotherapy of Cancer (SITC)
- The International Society on Thrombosis and Haemostasis (ISTH)
- The Society for Hematopathology
- The American Society of Clinical Oncology (ASCO)
- The European Society for Medical Oncology (ESMO)
- ČASOPISI
HULL PRENOSI OBJAVU EURORDIS-a (RARE DISEASES EUROPE - RIJETKE BOLESTI EUROPA)
Očekuje se da će slljedećeg mjeseca Europska komisija predložitit novi okvir upravljanja zdravstvenim podacima – Europski prostor zdravstvenih podataka, koji ima za cilj povezati nacionalne zdravstvene sustave Europe kako bi se osigurao siguran i učinkovit prijenos zdravstvenih podataka diljem Europe. O ovome možete detaljnije pročitati u nastavku, kao i o drugim inicijativama i aktivnostima, uključujući Europsku konferenciju o rijetkim bolestima te globalnu anketu o putu do dijagnoze rijetke bolesti koju provodi RARE BAROMETER, EURORDIS-ov istraživački program. U nastavku pročitajte i ostale vijesti o rijetkim bolestima.
European Health Data Space: Unlocking the potential of health data for rare diseases Sharing health data to advance scientific research and improve clinical practice is of particular importance to the rare disease community, where knowledge and expertise are limited, patient populations are geographically dispersed and their health data is scattered. Next month, the European Commission is expected to propose a new governance framework for health data – a European Health Data Space (EHDS) – which aims to connect European national health systems to ensure a secure and efficient health data transfer across Europe. Henceforward, such exchange would foster evidence-based care, promote informed health policy decision making, reinforce healthcare delivery and encourage data re-use to support research and accelerate the development of new rare disease treatments, medicines, and medical devices. |
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Hrvatska udruga leukemija i limfomi
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