CYSTIC FIBROSIS EUROPE EV

Their core work

Cystic Fibrosis Europe (CFE) is a pan-European patient advocacy organization based in Bonn, Germany, representing the interests of cystic fibrosis patients and their families across the continent. In H2020 projects, they contribute the patient perspective to clinical trials and digital health tools, ensuring that research outputs are relevant, accessible, and aligned with real patient needs. Their involvement spans self-management apps, personalized medicine using intestinal organoids, and clinical trials for new CF therapies — always bridging the gap between researchers and the patient community.

What they specialise in

How they've shifted over time

CFE's H2020 journey began in 2015 with a focus on digital self-management and social welfare tools for CF patients (MyCyFAPP). By 2018, their involvement shifted decisively toward clinical development — both personalized medicine via organoid testing (HIT-CF) and pivotal clinical trials for mutation-independent therapies (OligoGpivotalCF). This evolution mirrors the broader CF field's move from symptom management toward precision therapies and disease-modifying treatments.

CFE is moving toward precision medicine and advanced therapy trials, making them a valuable patient-side partner for any consortium developing personalized treatments for rare disease populations.

How they like to work

CFE operates exclusively as a participant, never as coordinator — consistent with their role as a patient organization contributing domain expertise rather than leading technical research. With 28 unique consortium partners across 10 countries in just 3 projects, they work in large, multi-national consortia typical of clinical and translational health research. Their value lies in being the trusted voice of the CF patient community within these large research teams.

Despite only three projects, CFE has built a network of 28 partners across 10 countries, reflecting the large consortium sizes typical of rare disease clinical research. Their connections span academic hospitals, pharmaceutical developers, and research institutes across Western and Southern Europe.

What sets them apart

CFE is the European umbrella organization for national CF patient associations, giving them unmatched access to the CF patient community across multiple countries. For any consortium developing CF therapies, diagnostics, or digital health tools, CFE provides something no university or company can: direct, trusted channels to patients and families for recruitment, feedback, and dissemination. Their track record in both digital health and clinical trial projects makes them a versatile patient-side partner.

Highlights from their portfolio

• HIT-CF
  Largest CFE project (EUR 141K) running until 2025, using intestinal organoids for personalized treatment of ultra-rare CF mutations — at the frontier of precision medicine.
• OligoGpivotalCF
  A pivotal Phase IIb clinical trial for a mutation-independent CF therapy (inhaled alginate oligosaccharide), representing a late-stage drug development effort.