Rare diseases and disorders / Projects

Second Programme of Community action in the Field of Health 2008-2013
European Haemophilia Network [EUHANET]
The objective of this project is to establish the European Haemophilia Network (EUHANET) to harmonise and improve the care received by European citizens with inherited bleeding disorders. The European...
The objective of this project is to establish the European Haemophilia Network (EUHANET) to harmonise and improve the care received by European citizens with inherited bleeding disorders. The European Health Professionals and Patient Organisations will work together to enhance the quality of the delivered care. Criteria will be developed for the definition of levels of care provided by haemophilia centres and these will be applied to centres throughout Europe. A new public Haemophilia Central website will provide all the information relevant to patients with inherited bleeding disorders and their carers. EUHANET will also support collaboration between the expanded and developed pharmacovigilance system, the European Haemophilia Safety Surveillance System (EUHASS), and the new prospective Rare Bleeding Disorders Database (RBDD).
Start date: 01/06/2012 - End date: 01/12/2015

Call: Promote Health (Hp-2010)
Topic: Rare diseases and disorders
First Programme of Community action in the field of public health (2003-2008)
The PRES European Network of Registries for Autoinflammatoy Diseases in childhood. [EuroFever]
The general aim of this project is to build a network on autoinflammatory diseases in childhood. In particular the project would like to complete and integrate already existing initiatives in this fie...
The general aim of this project is to build a network on autoinflammatory diseases in childhood. In particular the project would like to complete and integrate already existing initiatives in this field with the following actions:
- sensitize paediatricians and paediatric rheumatologists to the prompt recognition of these diseases,
- give a proper information among families affected by these conditions,
- increase the knowledge on the clinical presentation, response to treatment and complications of theses rare disorders.

Start date: 01/07/2008 - End date: 01/07/2011

Call: Health Information (Hi 2007)
Topic: Rare diseases and disorders
First Programme of Community action in the field of public health (2003-2008)
European Prevention Initiative for Dermatological Malignancies [EPIDERM]
EPIDERM aims to acquire and disseminate knowledge on skin cancers (SC) relating to their occurrence, risk factors, treatments and costs of illness to develop prevention and risk reduction strategies a...
EPIDERM aims to acquire and disseminate knowledge on skin cancers (SC) relating to their occurrence, risk factors, treatments and costs of illness to develop prevention and risk reduction strategies and best practice recommendations. It also aims to assess health literacy on SC and to help promote it by improving knowledge and awareness on three levels: general population, health practitioners and political authorities.
Start date: 01/07/2008 - End date: 01/01/2012

Call: Health Information (Hi 2007)
Topic: Rare diseases and disorders
First Programme of Community action in the field of public health (2003-2008)
European Register on Cushing’s Syndrome [ERCUSYN]
The project aims to establish a European registry of patients with Cushing’s syndrome (CS) and develop guidelines for the care of such patients.
Start date: 01/09/2007 - End date: 01/09/2010

Call: Health Information (Hi 2006)
Topic: Rare diseases and disorders
First Programme of Community action in the field of public health (2003-2008)
EUROCAT: Surveillance of Congenital Anomalies in Europe [EUROCAT]
To provide essential epidemiologic information on congenital anomalies in Europe.
To coordinate the establishment of new registries throughout Europe collecting comparable, standardised data.
To coo...
To provide essential epidemiologic information on congenital anomalies in Europe.
To coordinate the establishment of new registries throughout Europe collecting comparable, standardised data.
To coordinate the detection and response to clusters and early warning of environmental teratogenic exposures.
To evaluate the effectiveness of primary prevention, particularly prevention of neural tube defects and other congenital anomalies by raising peri-conceptional folate status.
To assess the impact of developments in prenatal screening at a population level.
To provide a database and collaborative network for research.
Start date: 01/09/2007 - End date: 01/09/2010

Call: Health Information (Hi 2006)
Topic: Rare diseases and disorders