New challenges and priorities are given in the EU Health programme 2007-2013. The objectives of the programme are to improve citizens’ health security, to promote health to improve prosperity and solidarity, and to generate and disseminate health knowledge. If challenges and priorities have been defined globally for rare diseases by the European Commission, persons involved in rare anaemias have taken the opportunity to contribute to the empowerment of patients with rare anaemias. One of the ENERCA partners objectives was the mapping of existing centres that take care of patients with rare anaemias in Europe. Another goal was to obtain a directory of facilities available per centre for patients with rare anaemias. We thought that with...
Rare diseases represent a major public health challenge due to their number, presently estimated to ...
Background: The European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) was lau...
Biobanking is of high importance for research in rare diseases. There are >6,000 rare dise...
The Community added value of Centres of Expertise (CoE) and European Reference Networks (ERN) is par...
Rare Anaemias (RA) are a group of Rare Diseases (RD) with prevalence, in Europe, less than 5 per 10....
The development of centres of expertise (CE) and European Reference Networks (ERN) in the field of r...
(RD) with prevalence, in Europe, less than 5 per 10.000 individuals. Major forms of RAs require red ...
RARE-Bestpractices (http://www.rarebestpractices.eu) is a 4-year project (2013-2016) funded by the E...
International audienceThe European Union Committee of Experts on Rare Diseases was entrusted with ai...
Two years ago, at the ECRD in Krakow, we were celebrat-ing the recommendation of the Council of Mini...
Rare diseases represent a major public health challenge due to their number, presently estimated to ...
In 2009 the European Commission asked the Member States to develop a strategy to improve the care of...
 This is a generic policy framework for rare diseases. Its scope is broad and it applies to all r...
Background: Major haemoglobinopathies (MH), such as thalassaemia syndromes (Thal) and sickle cell di...
European Reference Networks (ERNs) were founded on the principle that many rare disease (RD) issues ...
Rare diseases represent a major public health challenge due to their number, presently estimated to ...
Background: The European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) was lau...
Biobanking is of high importance for research in rare diseases. There are >6,000 rare dise...
The Community added value of Centres of Expertise (CoE) and European Reference Networks (ERN) is par...
Rare Anaemias (RA) are a group of Rare Diseases (RD) with prevalence, in Europe, less than 5 per 10....
The development of centres of expertise (CE) and European Reference Networks (ERN) in the field of r...
(RD) with prevalence, in Europe, less than 5 per 10.000 individuals. Major forms of RAs require red ...
RARE-Bestpractices (http://www.rarebestpractices.eu) is a 4-year project (2013-2016) funded by the E...
International audienceThe European Union Committee of Experts on Rare Diseases was entrusted with ai...
Two years ago, at the ECRD in Krakow, we were celebrat-ing the recommendation of the Council of Mini...
Rare diseases represent a major public health challenge due to their number, presently estimated to ...
In 2009 the European Commission asked the Member States to develop a strategy to improve the care of...
 This is a generic policy framework for rare diseases. Its scope is broad and it applies to all r...
Background: Major haemoglobinopathies (MH), such as thalassaemia syndromes (Thal) and sickle cell di...
European Reference Networks (ERNs) were founded on the principle that many rare disease (RD) issues ...
Rare diseases represent a major public health challenge due to their number, presently estimated to ...
Background: The European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) was lau...
Biobanking is of high importance for research in rare diseases. There are >6,000 rare dise...