Registration now open for CF Foundation’s ResearchCon 2025
The free virtual event is set for May 6
Registration is now open for ResearchCon 2025, a free event the Cystic Fibrosis Foundation assembles each year for researchers, doctors, and patients to share and discuss the latest advances in research and clinical care in cystic fibrosis (CF).
This virtual event, set online for May 6, provides an opportunity to connect with people who have firsthand experience about CF, learn about important topics in research and clinical care, and ask experts about how to better advocate for those with the disease.
“Explore your curiosity and engage with experts and peers, while deepening your understanding alongside those living with and studying the disease. This virtual event provides a space to ask questions and participate in discussions that equip you with knowledge to better advocate for yourself, your loved one, or your patients,” the CF Foundation states on its webpage.
Co-chair Melissa Putman, MD, an associate professor at Harvard Medical School, will give the opening remarks along with patients Mike Harnish, PhD, and Jennifer Weber, who began speaking and volunteering for the CF Foundation as young children.
CF is a genetic disease that causes thick mucus to build up in the lungs, the pancreas, and other organs. Symptoms include difficulty breathing and getting enough nutrition from food. While treatments have improved clinical outcomes, research continues for further benefits.
A range of topics
The first session, “What We Know and What We Don’t with GI and Nutrition Care,” will review nutrition and digestive problems caused by CF and how they can change as patients grow older. A parallel session, “Navigating Lung Transplant Challenges: Current Research, Clinical and Community Perspectives,” will focus on what happens after a lung transplant, including long-term complications.
A session titled “Gene-based Therapy in Action: Behind the Scenes Look at Genetic Therapy Trials,” will offer an inside look at clinical trials of experimental gene therapies, featuring perspectives from an adult with CF, a research coordinator, and a principal investigator. In another session, “Exploring Mental Health: Community voices, scientific insights, and what’s to come,” a caregiver of a child and a teenager will share their experience starting CFTR modulator treatment. Researchers will also discuss approaches toward measuring mental health in the CF community.
The first of three roundtable discussions will focus on clinical trials. Another will feature two experts who will discuss how Alyftrek (vanzacaftor/tezacaftor/deutivacaftor) compares with Trikafta (elexacaftor/tezacaftor/ivacaftor), following its recent approval. A third roundtable will discuss using CFTR modulators during pregnancy. A mother will share her own experience with Trikafta before giving birth.
All the sessions will include time for questions.
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