Category: Uncategorized

Access to treatment and care: a matter of health equity

Since the introduction of CFTR modulators over ten years ago, treatment and care of people living with cystic fibrosis (CF) has significantly changed. These treatments targeting the root cause of CF has led to better health outcomes and improved quality of life (1,2). The European Medicines Agency, who are responsible for approving treatments across Europe, […]

European Commission approves extension of Kaftrio to 2-5 year olds

CFE is pleased to let you know that European Commission (EC) has today (23 November) granted approval for the label expansion of Kaftrio for the treatment of children with cystic fibrosis (CF) aged 2 to 5 years old who have at least one F508del mutation in the CFTR gene. This is good news for European countries whose patients already have access […]

Creon shortages: a European problem  

In September, after some of our member organisations reported Creon shortages in certain countries, CF Europe launched a short survey to get a broad overview of the problem at the European level. More than 522 people with cystic fibrosis and their relatives from 30 countries completed the survey.   Thank you to all those who responded, […]

Update: supporting people with CF affected by the Israel-Gaza war

We are deeply saddened by the recent escalation of violence in Israel and Gaza, and we join all those calling for a ceasefire to allow humanitarian assistance into Gaza.   We are concerned for the lives of people with cystic fibrosis in the region, mostly children, doubly impacted by war. In addition to fear, loss and trauma, war impacts the possibility to access vital care, treatment, water and appropriate […]

Statement of support for people with CF affected by the Israel-Gaza war

CFE is very concerned about attacks on or near hospitals and health centres and areas of high population in both Gaza and Israel and the concomitant threat to all people with very vulnerable health conditions, including those with cystic fibrosis (CF) living in the region. We understand the very high tensions that currently exist between […]

Important change to the information leafet (the label) provided with Kaftrio®

The European Medicines Agency (EMA), the regulator for medicines in the European Union, has requested a change to the information included with Kaftrio®. This information is known as ‘the label’ and is the information leaflet that people with CF/parents will be familiar with and will find accompanying Kaftrio® and which has now been amended. Kaftrio® […]