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The Respiralia Foundation becomes a member of the European Lung Foundation thanks to the admission of its candidacy in its Patient Advisory Committee.
A forum to build synergies
ELF is a patient-led organisation that works internationally to bring patients and the public together with healthcare professionals to improve lung health and advance diagnosis, treatment and care.
The Patient Advisory Committee
The Patient Advisory Committee is made up of European respiratory patient organizations, with members representing different diseases, to ensure that all lung diseases are equally represented. The aim is to develop a united voice of respiratory patient organizations across Europe.
Our aim
From the Respiralia Foundation we want to offer our experience in the treatment of Cystic Fibrosis and make known the method of work that we follow in the project Educate is Health in Cystic Fibrosis, with the co-responsibility of the user as a basis.
This work system can be applied, with the appropriate adaptations, to any chronic disease requiring continuous treatment.
What is Cystic Fibrosis?
Cystic Fibrosis is a genetic, serious and degenerative disease that to date has no cure.
It mainly affects the respiratory, digestive, reproductive and sweat glands.
The treatment for Cystic Fibrosis includes antibiotherapy, a healthy and hypercaloric nutrition and respiratory physiotherapy combined with endurance exercises.
You can see the infographic published by the Cystic Fibrosis Spanish Federation in this link (Spanish version) or see how Dani tells us what this disease is for him in this vídeo (Spanish version).
Currently, more than 2000 mutations are known in the gene that is defective in people with Cystic Fibrosis, although only about 150 mutations are described as causing the disease.
Statistics show that 1 in 5,000 people in Spain has Cystic Fibrosis (1 in 6,400 in the Balearic Islands) and 1 in 35 people is a carrier of a gene that causes the disease (1 in 40 in the Balearic Islands).
In the Balearic Islands there are 76 known diagnosed cases, but statistics speak of between 85 and 90 possible cases.
The awareness project of the Respiralia Foundation aims to raise awareness of this disease in order to discover those cases of people who have Cystic Fibrosis but have not yet been diagnosed.
