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The Thalassaemia International Federation celebrates the International Thalassaemia Day

May 10, 2013

The 8th of May is a very special day dedicated both to commemorate the thalassaemia patients who are no longer with us and to celebrate all those patients fighting everyday for their right to a better quality of life. That is the spirit of the decision made by the Thalassaemia International Federation (TIF) to adopt one day of the year to spread awareness and knowledge on aspects of prevention and management of Thalassaemia.

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Guidelines for the Management of Patients with Beta-Thalassemia Major present meaningful variations among countries

April 16, 2013

The clinical guidelines are documents that aid medical professionals in decision making. When it comes to rare diseases, it is difficult to find devoted international clinical guidelines. For this reason four authors, including the ENERCA partners Dr. Michael Angastiniotis, Dr. Androulla Eleftheriou and Dr. John B. Porter, overviewed currently available guidelines for the management of Beta-Thalassaemia Major and explored apparent similarities and differences between them.

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Executive Summary of the 7th Meeting of the EUCERD now online

April 10, 2013

The meeting saw the unanimous adoption of the EUCERD Recommendations on European Reference Networks for Rare Diseases, which will feed into the work of the Cross-Border Healthcare Expert Group, currently in the process of aiding the European Commission implement the Cross-Border Healthcare Directive.

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FEDER suggests 13 initiatives to support rare diseases patients

They are the result of consensus between over 250 associations of patients with rare diseases

March 8th, 2013

The Spanish Federation for Rare Diseases (FEDER) has proposed to the Spanish Government a set of 13 measures aimed at improving the quality of life of rare diseases patients and give them the support they need. The list of initiatives includes promoting research on these diseases, declaring them chronic diseases and exempting affected families from pharmaceutical copayment.

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EU provides €144 million for new research on rare diseases

The selected projects bring together over 300 participants from 29 countries in Europe and beyond

March 4th, 2013

The European Commission, on Rare Disease Day 2013 February 28th, announced €144 million of new funding for 26 research projects on rare diseases. The selected projects bring together over 300 participants from 29 countries in Europe and beyond, including teams from leading academic institutions, SMEs and patients' groups. The goal is to pool resources and work beyond borders, to get a better understanding of rare diseases and find adequate treatments.

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Watch the Official Rare Disease Day Video

Join the sixth Rare Disease Day that takes place on 28 February 2013

February 12th 2013

The Official Rare Disease Day Video is a must see. Join the sixth Rare Disease Day that takes place on 28 February 2013 around the globe. This year's slogan "Rare Disorders without Borders" emphasizes the need for international cooperation.

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Public Consultation Survey on the Implementation of European Reference Networks (ERN)

ERNs will facilitate improvements in access to diagnosis and healthcare in medical domains where expertise is rare

February 1st 2013

DG Health & Consumers is launching a public consultation targeted to stakeholders on the implementation of European Reference Networks (ERN). It focuses in particular on the criteria to be considered according to Article 12 of the Directive 2011/24/EU on the application of patients' rights in cross-border healthcare, which requires the Commission to adopt a list of criteria that the networks must fulfill, and the conditions and criteria which providers wishing to join networks must fulfill.

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New Key players against Rare Diseases presented at the F.C. Barcelona’s stadium

70 institutions join efforts in three coordinated European Projects funded with 38 million Euro

January 24th 2013

Rare diseases – while individually uncommon – affect one person in every 17 and 80% have a genetic component. Today, the EU has announced 38 million Euro funding for research towards new treatments and for the development of a central global rare disease hub involving 70 institutions that will allow scientists to share data from their genomics research projects. Dr. Joan Lluis Vives-Corrons, a physician from IDIBAPS-Hospital Clínic and coordinator of ENERCA, is an associated partner of one of those projects.

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Summary report of the 6th Meeting of the EUCERD

The European Union Committee of Experts on Rare Diseases (EUCERD) met for the sixth time on 14-15 November 2012

January 22nd 2013

The two-day meeting was the opportunity to tackle a number of priority subjects, including the elaboration of the EUCERD Recommendations on European Reference Networks for Rare Diseases, and the proposal from the European Commission to create an EU platform for rare disease registration. ENERCA participated in the sessions presenting its 10 years of experience.

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Become a Friend of the Rare Disease Day

The Rare Disease Day 2013 is fast approaching

January 17th 2013

On 28 February, the entire rare disease community worldwide will converge to raise awareness for rare diseases and the millions of people affected. ENERCA has already signed up as a "Friend of Rare Disease Day“. This initiative has been created to give visibility to those who want to do something to raise awareness for rare diseases. The whole campaign is coordinated by EURORDIS at the international level and the National Alliances of Patient Organisations at the National level.

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