Organisation Name:
Asociación Española de Porfiria
Address:
Plaza Nueva York, 12
03440 - Ibi (Alicante)
Email:
siremoveo@porfiria.org, porfremoveiria.es@gmail.com
Porphyria Related Activities:
· Inform, support and provide guidance to patients suffering from any form of porphyria and their families.
· Promote all ways facilitating contact and communication between porphyria patients.
· Spread knowledge about these deseases in all their complex reality.
· Promote, support and participate in initiatives and activities for a best sanitary, social and educational care, and for the life quality of the patients.
· Initiate and support studies and therapeutic, genetical and clinical investigation on these deseases.
· Create a better sensibilisation of the public and in the administrations, offices and organizations to get the entire integration of the patients.
· Stand up for the patients and their families.
· Spread the activities of the Association.