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Featured Article: European Rare Blood Disorders Platform (ENROL): kick-off meeting on July 2nd.

The ITHANET Newsletter

The European Rare Blood Disorders Platform (ENROL) conceived in the core of ERN-EuroBloodNet to serve as an umbrella for both new and already existing registries on rare haematological disorders (RHD), has officially started June 1st, 2020. The primary objective of ERNOL will be to map at the EU level demographics, survival rates, diagnosis methods, genetic information, main clinical manifestations and treatments as to obtain epidemiological figures and identify trial cohorts for basic and clinical research. To achieve this, ENROL will promote the development of new RHD registries in countries lacking one or connect and facilitate upgrading of existing RHD registries. Furthermore, targeted actions will be carried out in collaboration with EURORDIS for educating patients and families about the benefits of enrolment in such registries. ENROL is co-funded by the European Commission - Consumers, Health, Agriculture and Food Executive Agency (CHAFEA) under the call for proposals HP-PJ-2019 on Rare disease registries for the European Reference Networks. The aims and main objectives, as well as key points of ENROL, will be presented in the online kick-off meeting in July 2nd, 2020, where ERN-EuroBloodNet members, affiliated partners, and other stakeholders’ contribution will be crucial for ENROL implementation and success. More information here and registration for the kick-off meeting here.

European Commission Approves Reblozyl (luspatercept) for the Treatment of Transfusion-Dependent Anemia in Adult Patients with Myelodysplastic Syndromes or Beta Thalassemia

FRIDAY, JUNE 26, 2020 9:05 AM EDT

Reblozyl regulates late-stage red blood cell (RBC) maturation to potentially reduce or eliminate the need for regular RBC transfusions Reblozyl is the first and only erythroid maturation agent to be approved in the European Union, representing a new class of therapy

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NEWS ON COVID-19 AND RARE HAEMATOLOGICAL DISEASES. EuroBloodNet

04/04/2020

The correct treatment and management of infection by Coronavirus (COVID-19) in patients affected by Rare Hematological Diseases may be challenging given the rapid spread of the pandemia and limited literature so far, especially in some countries. At this crucial stage, efforts are being devoted by different initiatives for the generation of documents with indications for the clinical care of these patients. Find below some of the documents produced with the participation of EuroBloodNet members, including language and target (health professionals or patients).   hafta hafta gebelik gebelik kadın hastalıkları hamilelik belirtileri kadın doğum uzmanı bakırköy jinekolog jinekolog gebelik hesaplama hamilelik kadın hastalıkları hafta hafta hamilelik

TIF NEWS.THE COVID–19 PANDEMIC AND HAEMOGLOBIN DISORDERS

A contribution of Thalassaemia International Federation to its global patients’ community

24/03/2020

      

TIF NEWS

Oct 8 th 2019

      

European Reference Networks

2019 call for membership to the existing European Reference Networks (ERNs)

30 September - 30 November 2019

The first call for new members to join existing 24 ERNs is open until 30 November 2019. 

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ISLH October Webinar

Hemoglobinopathy update; Mechanisms , diagnostics and new developments

17 oct 2019 11:00 AM en Hora del este (EE. UU. y Canadá)

Hemoglobinopathies are mostly autosomal recessive disorders and heterozygotes are symptom-free but present various hematological characteristics which are used for their identification in carrier screening programs. The presentation will highlight some unexpected molecular mechanisms showing interesting genotype-phenotype correlations, either ameliorating or deteriorating the clinical presentation of hemoglobinopathy.   

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E-learning course in growth disorders and endocrine complications in youth and adults with thalassemia

This online e-learning module prepared that will support interactively the Thalasemia guide for Patients, and Thalasemia Guide for Hematologs and Nurses in the framework of the European EQUALITY project. The focus of the ICT-based training programme be hematologs and interested medical doctors. The module  include online tests.

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Welcome to the EHA Campus!

Peer reviewed online education and training for hematology professionals

Visit the EHA Campus now! Are you interested in strengthening your hematology knowledge? The EHA Campus is the place to be for online hematology education. This user-friendly platform is packed with interactive learning tools, designed and reviewed by hematology professionals, especially for you. Practice real-life scenarios online from anywhere at any time. The EHA Campus is freely accessible until September 15, 2019 and will be continuously updated with new learning materials.

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Join the ''TEST2CONTROL'' WEBINAR organized by TIF & Bio Rad Laboratories

8 May 2019 INTERNATIONAL THALASSAEMIA DAY

8 May 2019

Dr. Michael Angastiniotis, Medical Advisor, Thalassaemia International Federation (TIF) & Dr. Daniel E. Bauer, MD PhD

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