TOWARDS EQUAL ACCESS TO APPROPRIATE CARE

Cystic Fibrosis (CF or Mucoviscidose) is the most frequent life threatening genetic disease in Europe. In some countries the median age at death of people with Cystic Fibrosis is more then 35 years, in other countries the majority of children die before their 5th birthday! Guidelines for best standards of care were developed to ensure appropriate treatment in Europe. In countries where these guidelines are followed and appropriate care is provided and patients have full access to medication and treatments life expectancy is now more then 40 years old. Most children have few symptoms and serious problems can be delayed until adulthood. In regions where the disease is not yet well known and access to appropriate care is poor, the life expectancy and quality of life are still very low. With this 3rd European CF Awareness day we want to continue our fight for equal access to appropriate care for all children and people living with this disease in Europe!