The MATIO Foundation is organising, for the nineteenth time from 24 February to 1 March 2020, a public awareness campaign entitled National Cystic Fibrosis Week, which will be entirely devoted to disseminating knowledge about cystic fibrosis, its symptoms, diagnosis, treatment and opportunities to live with the disease with dignity and for longer.
Campaign slogan : "CANCER DISEASE - WHAT DO YOU KNOW ABOUT THE DISEASE ?"
The aim of this year's campaign is to focus not only on educational activities aimed at the general public, but also directly at people who come into contact with cystic fibrosis patients on a daily basis, people who can themselves undertake educational or information activities about the disease in various environments, people who want to help cystic fibrosis patients and their families in a conscious way, and above all young people planning to start a family.
Rare diseases attract less public interest than others. Despite the fact that some of them are fatal diseases, or change our whole lives and the lives of our families, they still go out of the public eye. That is why In this year's campaign we want to place particular emphasis on raising public awareness of the rare disease cystic fibrosis in its various aspects.
Cystic fibrosis is a genetic disease caused by the inheritance of an altered gene. The inheritance of a normal or altered gene is always a random phenomenon, completely beyond our control. One in 33 people is a carrier of a gene that can cause cystic fibrosis. We usually find out that we are carriers of a defective gene when we have a sick child. Cystic fibrosis (cystic fibrosis), a disease that cannot be seen at first glance, is the most common genetic disease categorised as rare. Cystic fibrosis is mainly manifested by very salty sweat, weight deficiency and frequent pneumonias that are difficult to treat. Patients live with the spectre of imminent and premature death, usually from respiratory failure. They spend almost half of their lives in rehabilitation, adhering to a strict diet and taking thousands of pieces of medication each year. In the final stage of the disease, they hardly leave their hospital bed.
While some genetic diseases are managed by medicine, most treatments are still based on curing or alleviating symptoms in order to improve the quality of life of those affected, but the majority are still helpless against the.
Genetic disease cannot be prevented. Therefore For 24 years, the Foundation for Helping Families and Patients with Cystic Fibrosis has been fighting to improve the quality of life of patients, running campaigns and information campaigns on this incurable disease and presenting diagnostic and treatment options. Throughout the entire period of the Foundation's activities, we have spared no effort to ensure that society recognises and understands the nature of this disease - disability.
National Cystic Fibrosis Week Honorary Patronage:
- Minister of Health- Lukasz Szumowski
- Marshal of the Małopolska Region - Witold Kozłowski
- Mayor of the City of Krakow - Jacek Majchrowski
- State Fund for the Rehabilitation of the Disabled
- Collegium Medicum of the Jagiellonian University in Kraków
For more information including activities during the XIX National Cystic Fibrosis Week, please visit MATIO Foundation
(press release)