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Rare Disease Day 2020

29 de febrero de 2020

February 28, 2019

  Descubre de qué se trata el Día de las Enfermedades Raras El 29 de febrero de 2020 será el decimotercer Día Internacional de Enfermedades Raras coordinado por EURORDIS. Alrededor de este día, cientos de organizaciones de pacientes de países y regiones de todo el mundo realizarán actividades de sensibilización. 

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TIF NEWS

Oct 8 th 2019

      

Webinar

Industry strategies for combining European Registries, and RWD Study platforms

Oct 8 th 2019

George Reynolds: Managing Partner.  Providing independent consulting in clinical data collection strategies for rare disease research. A subject matter expert in ERNs Registries and RWD in Europe.  Delivering a proactive data collection roadmap to avoid Dead End Data.       

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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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Rare Disease Day 2019 is approaching! Show your rare. Show you care.

28 February 2019 will be the eleventh international Rare Disease Day coordinated by EURORDIS

February 28, 2019

  Rare Disease Day is approaching and thousands of events are organised worldwide to celebrate this special day. The theme for Rare Disease Day 2019 is 'Bridging health and social care'. This theme places attention on the importance of bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day. Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.  

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RD-Connect invites ERN members to join the RD-Connect Community

In July 2018 the new RD-Connect Community was launched as an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research.

In July 2018 the new RD-Connect Community was launched. This is an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research. Membership is free of charge and open to organisations, research groups and individuals from diverse backgrounds, engaged in rare disease research anywhere in the world. Several ERNs have signed up as members, but you are welcome to register as individual healthcare professionals HCPs and research groups.

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