CFF ResearchCON on Tap Online in April With Latest CF Updates

Mary Chapman avatar

by Mary Chapman |

Share this article:

Share article via email
CFF ResearchCON | Cystic Fibrosis News Today | announcement illustration of man speaking at podium

Registration is open for this year’s ResearchCON, a free two-day online educational event that seeks to present the latest in cystic fibrosis (CF) research, science, and care in a way that’s accessible, engaging, and easy to understand.

The Cystic Fibrosis Foundation (CFF) event will be held on April 7th and 9th and is open to anyone age 16 and older who has a personal or professional connection to CF.

This year, there will be opportunities to connect with scientists, clinicians, and community members about the latest in research, and to ask questions.

“Whether you’re new to CF or you’re up to date on the latest science happenings, this year’s ResearchCON will have something for everyone,” the CFF states on an event webpage. “Join us and learn how you play a role in research.”

Recommended Reading
CFTR modulators | Cystic Fibrosis News Today | illustration marking rare disease patients

CFTR Modulators Bring Hope, Stability to Young Adults With CF

The more than two dozen event speakers include patients, physicians, parents of pediatric patients, and CF researchers. A clinical social worker and mental health coordinator who specializes in CF, a pharmacist, and a pediatric respiratory therapist also are among the speakers lined up for the event.

Participants may choose among sessions — all of which, along with keynote presentations, will be recorded and later available in English and Spanish on the organization’s YouTube channel. Live Spanish translations will be available throughout the program. Note that breakout sessions, each of which will be led by a trained facilitator, will not be recorded.

The event agenda, which was developed with input from community members and volunteers, is as follows for April 7:

  • Keynote presentation by CF patient Shelby Luebbert and Gregory Sawicki, MD, from 7 p.m.-7:45 p.m. EDT, titled “Until It’s Done: The Importance of Your Story to Accelerate Improvements in CF Care and Outcomes.” The presentation breaks down the concept of research and highlights the importance of patient stories in improving care and outcomes.
  • A 75-minute session titled “Listen to Your Gut,” about the digestive system in CF, begins at 8 p.m. EDT.
  • Another session, titled “Speaking in Laymen’s Germs: Recent Developments in CF Lung Infection Causes, Diagnostics, and Treatment,” also runs from 8 p.m. to 9:15 p.m. EDT.
  • An information session titled “The Real, the Raw, the Mental Health Continuum,” exploring the continuum of mental health and wellness in CF, also is scheduled at 8 p.m.–9:15 p.m. EDT.

There will be networking and expo booths available from 9:15 p.m. until 10 p.m. EDT.

For April 9:

  • Day 2 opening remarks run from 12:45 p.m. to 1 p.m. EDT.
  • A session titled “Is it My Age or Is it CF?” will cover aging, palliative care, hormone changes, and cancer screening. This session is scheduled for 1 p.m.–2:15 p.m. EDT.
  • Also at that time is another session, titled “Let’s Build the Future of Daily Care Together,” about new treatments and the evolving state of daily care for CF patients.
  • “Trikafta Experiences: Keeping it Real-(World),” about experiences with the breakthrough CF treatment Trikafta, also will run from 1 p.m. to 2:15 p.m. EDT.

From 2:15 p.m. until 3 p.m. EDT, there will be networking sessions open to all.

  • A session titled “Something for Everyone: A Look at Possibilities and Challenges of Genetic Therapies on the Horizon,” is slated for 3:15 p.m.–4 p.m. EDT.

Visit this site for answers to frequently asked questions about the event.