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ENERCA and the Spanish PNH Association join their efforts to increase awareness about the disease

A collaboration agreement will be the framework for both institutions to promote patient and professional-oriented activities

October 19th 2012

Jordi Cruz and Joan Lluís Vives-Corrons

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.

Paroxysmal Nocturnal Haemoglobinuria (PNH) is a rare acquired disease of the blood, which affects an annual rate of 1-2 cases per million. It is characterised by anemia due to destruction of red blood cells in the bloodstream, red urine due to the appearance of haemoglobin in the urine and thrombosis. The disease may occur at any age but it preferentially affects young adults. Only bone marrow transplantation permanently abolishes the hematopoietic defect, but recently a long term study showed the clinical benefits after 8 years of continued treatment with Eculizumab.

The collaboration agreement was signed by Dr. Joan Lluis Vives-Corrons, coordinator of ENERCA, and Mr. Jordi Cruz Villalba, President of the Spanish PNH Association. It will be the framework for both institutions to promote patient and professional-oriented activities to raise awareness about the disease and empower patients for a better management of their condition.

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