NACFC 2023: Cystic fibrosis is in a state of change

NOVEMBER 24, 2023

In early November, Cystic Fibrosis Canada team members attended the annual North American Cystic Fibrosis Conference (NACFC) in Phoenix, Arizona, participating in focused discussions, presentations, and plenaries that shed light on the latest developments in CF research, care, and drug development. One common thread emerged from around the world: cystic fibrosis is in a state of change and researchers and care teams have to apply new ways of thinking for this now very diverse community and their different needs. 

Here are a few highlights and important topics that were prevalent throughout the conference: 

Equity and Accessibility at the Forefront 

Equity and accessibility education was prevalent throughout the conference, particularly regarding modulators for diverse populations. A presentation led by Dr. Sanja Stanojevic a CF Canada funded researcher and respiratory epidemiologist at Dalhousie University, for example, focused on the challenges and worsened health outcomes for those living with CF of diverse ethnicities. Another topic highlighted was the importance of enhancing accessibility for all with cystic fibrosis, with the idea of bringing treatment to patients rather than patients to treatment.  

Mental Health and Cystic Fibrosis 

A common theme throughout the event was the importance of mental health in the cystic fibrosis community. Plenary sessions dedicated to mental health integration into CF care and research highlighted the emerging challenges, especially in the era of Trikafta. The well-being of CF care teams was also a focal point, acknowledging the often-overlooked mental toll of providing care, especially to those living with a fatal disease. 

Current and Future CF Research and Drug Development 

Developments in RNA, gene editing, and gene transfer were a highlight at this year’s conference. Discussions revolved around the expanding role of modulators and raising awareness of their impact including emerging issues such as asthma and diabetes.  

Celebrating Canadian Work 

Canada made significant standings at the conference, with Canadian researchers and clinicians making contributions to many of the presentations and discussions.  

Highlighting the next generation of research talent, two out of the five finalists for Junior Investigators were Canadian, Rachel Holland from Dalhousie University, a workshop speaker and finalist Junior Investigators Best Abstract in Clinical Research and Dr. Reem Jad, MD, University of Toronto, workshop speaker and winner Junior Investigator Best Abstract in Clinical Research. Their projects brought proud recognition and applause to the Canadian CF work and research ongoing. 

Canadians Coming Together 

Perhaps the most exciting collaborations were at the Canadian meetings. Cystic Fibrosis Canada brought together 240 Canadian CF clinicians to discuss emerging cystic fibrosis trends in Canada. At the meeting, clinicians discussed developing national standards of care, health and human resource guidelines, and what each discipline group is currently focusing on. Additionally, Cystic Fibrosis Canada hosted a meeting for 35 Canadian CF nurses, showcasing Canada’s collaborative commitment to advancing CF care.  

Thank you to our generous sponsors  Vertex Pharmaceuticals, Horizon Therapeutics, and Viatris for helping to make these important Canadian connections possible.