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.
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.
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.
January 3rd 2013
Another year begins. Singing an optimistic song seems a good way to welcome it. This song by “El desván del duende” is an interesting collaboration supported by FEDER (Spanish Federation of Rare Diseases). One of the artists appearing in the song is El Langui, a rap singer suffering cerebral palsy. Listen to the song and take a look at the lyrics translation from Spanish. ENERCA joins the message of this song. You can do it if you want to. We will do it together.
November 29th 2013
Ana Mato, the Spanish Minister of Health, Social Services and Equality, communicated recently that 2013 will be the Spanish Year for Rare Diseases. This initiative wants to increase Spanish citizens’ knowledge about these pathologies and arouse the interest of researchers, practitioners and industry. Only in Spain, about three million people are affected by some of the 7,000 rare diseases.
November 16th 2012
The 3rd Pan-European Conference on Haemoglobinopathies & Rare Anaemias, organized by the Thalassaemia International Federation (TIF), was hold in Limassol (Cyprus) on November 24th - 26th. With only three editions this event has become a must-be for experts in the field. During three days of intensive activity a wide range of aspects related with Haemoglobinopathies & Rare Anaemias were discussed, including two special sessions devoted to ENERCA.
October 19th 2012
Information is a scarce good, especially when it comes to rare diseases. Information helps patients to understand better their circumstances, accepting and managing it better. That is one of the main reasons why ENERCA and the Spanish Paroxysmal Nocturnal Haemoglobinuria Association have recently signed a collaboration agreement to join their efforts in the diffusion of knowledge about this rare anaemia and its patient’s association activities.
October 18th 2012
Organized by the (TIF), The Pan-European Conference is an international meeting oriented to all the key players in Haemoglobinopathies & Rare Anaemias, including patients and patient organisations, healthcare professionals, academics, researchers, policy-makers and industry.
October 1st 2012
The Thalassaemia International Federation organizes the 3rd Pan- European Conference on Haemoglobinopathies and Rare Anaemias, to be held in Limassol (Cypruss) on 24 – 26 October 2012. In the context of this important scientific conference in the field of Haemoglobinopathies, ENERCA will be at the heart of the debate in two sessions devoted to its 10 years of experience. The main achievement to be presented will be the White Book for the creation of a European Reference Network (ERN) of Centers of Expertise in Rare Anaemias (RA).
September 29th 2012
One of the risks related to blood transfusion is iron overload, which demands an adequate treatment to prevent serious complications. A recent study published by the the EPIC (Evaluation of Patients' Iron Chelation with Exjade) study investigators studies the geographical variations in current clinical practice on transfusions and iron chelation therapy. The results, appeared in the Blood Transfusion magazine, show that the risks of iron burden may have been underestimated and current iron chelation therapy, if considered, may not have been adequate to control iron burden. John B. Porter, an ENERCA partner from the University College London (London, United Kingdom), is among the main authors of the article.