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Irene Norstedt talks about rare disease’s grant situation in Europe and IRDiRC

Watch online the Deput Head of Unit Personalised Medicine at European Commission

May 22, 2014

The Deput Head of Unit Personalised Medicine at European Commission offered a presentation to summarize the Grant frameworks for rare diseases available in Europe. Watch the talk offered last March during the Worldwide Orphan Medicinal Designation Workshop held in London.

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TIF honoured the International Thalassaemia Day

This year’s theme was: “Economic Recession: Observe – Join forces – Safeguard Health”

May 18, 2014

Every year for the International Thalassaemia Day, on the 8th of May, Thalassaemia International Federation (TIF) honours this day through different activities. All of them aim to promote awareness and education around the world in 117 member associations of TIF in 56 countries.

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ENERCA participates in a Workshop on European Reference Networks

ENERCA was selected as an example of network to share its current tools and experiences

April 2, 2014

The coordinator of ENERCA, Prof. Joan Lluís Vives Corrons, was invited to explain the organization model designed for the fourth phase of the project, e-ENERCA. The debate celebrated in Brussels last March 25 2014 focused on IT tools and networking elements.

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Belgium, UK and Germany move forward in the fight against rare diseases

All three countries presented recently their national Plans and Strategies

March 17, 2014

All three countries presented have recently presented their Plans and Strategies in the fight against rare diseases. This kind of documents organizing the fight against rare diseases in European countries are necessary to reach a more harmonized and effective clinical care.

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ESH Interactive Poster Sessions from the Annual Meeting 2013, now online

Presentations by investigators involved in cutting-edge studies

February 24, 2014

The European School of Haematology (ESH) recently shared online the Interactive Poster Sessions from the Annual Meeting 2013, which was held in New Orleans, Louisiana. Watch these interesting sessions online and receive up to date knowledge on rare anaemias.

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A beautiful video for the 2014 Rare Disease Day

This year's video shows the many facets of "caring"

February 17, 2014

28 February 2014 marks the seventh international Rare Disease Day coordinated by EURORDIS. Hundreds of patient organisations from more than 70 countries and regions worldwide are planning awareness-raising activities. The traditional video to present the new campaign is out. Again, it is encouraging, heartfelt and beautiful.

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Haemoglobinopathies on the Move: Is Europe ready?

A spotlight on the different policies and practices of ten EU countries

February 10, 2014

A detailed report concludes that, despite the improvements reached, a tailored, comprehensive, holistic approach to haemoglobinopathies is not equally applied across the EU members. The document was developed by a group of experts from ENERCA and TIF, in collaboration with the International Organization for Migration (IOM) and sponsored by Novartis Farma.

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Half a Score: A video from EPIRARE about rare diseases

Registry initiatives on rare diseases are urgent

February 6, 2014

EPIRARE (European Platform for Rare Disease Registries) encourages the adoption of the EU Council Recommendation on rare diseases (2009/872/CE), which recommends support of registers and databases for epidemiolocial purpose. Keep on reading to view an interesting video with interviews to explain the urgency of building new registry initiatives in rare diseases.

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Horizon 2020 is here to stay

The Work Programme "Health, demographic change and wellbeing" includes funding for European Reference Networks

December 20 2013

Horizon 2020, presented a few days ago, aims to address the needs of specific population groups, including those suffering from rare diseases, and ensure access to effective and competent health and care systems. It  is a new chance to create an environment to fight rare diseases more efficiently.

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Read the presentations of the 5th European Symposium on Rare Anaemias

The Symposium was completed with the 1st Italian Thalassaemia meeting for patients

December 15, 2013

The 5th European Symposium on Rare Anaemias joined in Ferrara (Italy) 200 attendants, including patients and experts. Now you can access most of the presentations through the ENERCA website. The event, celebrated in November 15th – 16th, is an activity to disseminate up-to-date knowledge on rare anaemias and, at the same time, increase their awareness. Its organizers were the European Network for Rare and Congenital Anaemias (ENERCA); the Italian Federation of Associations for Thalassaemia and Sickle Cell Disease (UNITED); and, the Thalassaemia International Federation (TIF).

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