News
ECRD2020 – The conference on rare diseases happened online on 14-15 May 2020
The ECRD is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies. Due to the Covid-19 pandemic, […]
First site initiation for OligoGpivotalCF in Austria
OligoGpivotalCF is about to start! On 6 May 2020 the first site was initiated in Wels, Austria, and more site initiation visits are planned for the coming months. Pending the […]
CF Europe requests that EMA consider a conditional marketing authorisation for the triple combination
In February, we appealed to the EMA to review the latest triple combination modulator therapy, elexacaftor–tezacaftor–ivacaftor, with a sense of urgency. Today, the urgent need for this therapy could not […]
A multinational report to characterise SARs-CoV-2 infection in people with cystic fibrosis
Authors: Rebecca Cosgriffa, Susannah Ahernb, Scott C. Bellc, Keith Brownleea, Pierre-Régis Burgeld, Cass Byrnese, Harriet Corvolf, Stephanie Y. Chengg, Alexander Elberth, Albert Faroh, Christopher H. Gossi, Vincent Gulmansj, Bruce […]
OligoGpivotalCF and Covid-19
AlgiPharma CF Clinical Trial Operations in Europe on hold Regulatory and ethical approvals have been received from Austria and UK, and approvals are expected to follow soon in Germany and […]
Young Investigators give research a breath of fresh air!
The European Young Investigators Meeting of cystic fibrosis (CF) researchers was held in Paris at the end of February. It was hosted by the French CF Association ‘Vaincre la Mucoviscidose’ […]
CF & COVID-19 (corona)
The outbreak of the COVID-19 virus in Europe is causing concerns for everyone and especially so for people with CF and their carers. This is why we want to provide […]
Our letter to EMA to support the evaluation of the triple combination of CFTR modulators
On behalf of the 48 national Associations in Europe, representing people with CF and their families, CF Europe has sent a letter to the Chair and the Rapporteurs at EMA […]
First phase of the HIT-CF-Europe project completed successfully
Today, CF Europe is proud to announce, on behalf of the HIT-CF consortium, the successful completion of the first phase of the project with the collection of biopsies from 502 […]
CFE is recruiting!
CF Europe and the ECFS Patient register join forces to hire an Administration and Communication Assistant. This person will work 50% for CF Europe and 50% for the ECFS-PR. If […]
Looking for people with CF to participate in an interview study into opinions and preferences about the (long-term) storage of organoids for medical research
Are you familiar with ‘mini-guts’ (organoid technology) grown from stem cells and their potential for CF precision medicine? Are you fluent in English and have you donated stem cells – […]
The 2017 annual report of the ECFS Clinical Trial Network is now available!
The ECFS-CTN has released its 2017 annual report. Not only does it come in a new design, it is also the first report based on the detailed and critical input […]
Survey patient projects by ECFSPR and CF Europe
The European CF Patient Registry (ECFSPR) and CF Europe have been working closely together in the past years to increase the visibility of the ECFSPR within the CF community. Several […]
CF Research News now on CF Europe website
From now on, the CFE website features CF Research News, which are layman’s language summaries of recent work published in the Journal of Cystic Fibrosis. Via the Google Translate bar, […]
13th European CF Young Investigator Meeting (EYIM)
The European CF Young Investigator Meeting (EYIM) was launched in 2007 by 5 patient organizations (Belgium, France, Germany, Italy, The Netherlands) in collaboration with the ECFS and the Medical Faculty […]
9th South Eastern European CF conference
CF Europe is happy to announce that the 9th South Eastern European CF Conference will take place on the 16th and 17th of November in Slovenia! More details and information […]
Insights into the cystic fibrosis care in Eastern Europe
In order to gain more insight into the standards of CF care in Eastern Europe, one CF professional and one CF patient representative per country were surveyed. The results of […]
The European CF Patient Registry has published its 2016 report!
You can find the full ECFSPR report here. Also available is the At-a-glance report 2016, with key information for people with CF and their families. On the ECFSPR website, also […]
HIT CF – project launched!
In January 2018 the HIT CF project kicked off. This European project brings together researchers, doctors, pharmaceutical companies and patient representatives with the aim to develop ‘personalized treatments’ for Cystic […]
New at-a-glance report of the ECFS-PR online
The ECFS-PR has launched its at-a-glance report 2015 with key information of the Annual Report, designed for people with CF and their families. You can find the at-a-glance report here: […]
New At-A-Glance Report From The European CF Registry Available
The ECFS Patient Registry is very pleased to present the At-a-Glance Report 2014 with key-information from the European Annual Data Report 2014. The At-a-glance guide is created, in a joint […]
Journal Of CF Research News Now Available In Lay Language
Bridging the gap between people with CF and researchers investigating CF is an ongoing challenge. The ECFS made an important step on the website ‘CF Research News’ where they provide […]