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FENAER member Alfa-1 Spain organises, in the last week of August 2018, the “Alfas en Camino 2018”, the inspiring exercising trail towards Santiago de Compostela, adapted for respiratory patients.  The objective is raising public awareness around deficit of Alpha-1 antitrypsin and its consequences. In addition to alpha-1 patients, it is also open for patients with any type of respiratory diseases, such as COPD or asthma. It will be a global call for attention from society towards Alpha-1 Deficiency, rare and respiratory diseases. Family, carers and friends from all over Europe are also welcomed to the last stretch of the Camino de Santiago.

Alfa-1 Spain encourages the participation of patients regardless of their degree of disability or need for supplemental oxygen, as there will be infrastructures for the support of respiratory patients, such as oxygen replacement or vehicles for the transfer of patients from and to the reference meeting points. It is also a very good opportunity to encourage patients to practice physical exercise as a key to the management of their illnesses.

The project includes the preparation and signing of a manifesto (link), the Declaration of Santiago, which includes the demands of Spanish and international alpha patients regarding diagnosis, health care and the right to treatment. The Declaration will be supported by the Recommendations of the European Group of Experts on Alpha-1 Antitrypsin Deficiency,  by Alpha-1 Global, which seeks to raise awareness and response in all European countries to the needs of diagnosis and care of those affected.

Tags: Category: News,Member news
Country: Spain
Disease area: Asthma, COPD, Other diseases