Nom de l'organisation
Asociaci贸n Espa帽ola de Porfiria
Adresse
Plaza Nueva York, 12
03440 - Ibi (Alicante)
Email
siremoveo@porfiria.org, porfremoveiria.es@gmail.com
Site Internet
www.porfiria.org
Email
fidemremoveiron@porfiria.org
Objectifs et actions
路 Inform, support and provide guidance to patients suffering from any form of porphyria and their families.
路 Promote all ways facilitating contact and communication between porphyria patients.
路 Spread knowledge about these deseases in all their complex reality.
路 Promote, support and participate in initiatives and activities for a best sanitary, social and educational care, and for the life quality of the patients.
路 Initiate and support studies and therapeutic, genetical and clinical investigation on these deseases.
路 Create a better sensibilisation of the public and in the administrations, offices and organizations to get the entire integration of the patients.
路 Stand up for the patients and their families.
路 Spread the activities of the Association.