by Guest Author | May 18, 2026 | Podcasts
A mother, advocate and one woman’s global fight for access. Beth Vanstone is working to ensure rare disease patients don’t have to wait for the treatments they need to survive. Sometimes the most powerful friendships begin in the most unexpected places. Beth...
by Guest Author | May 13, 2026 | News
We will never stop advocating for people with CF and rare diseases. The future is determined by all of us — for those who will live beyond us. Let’s make sure they have fair laws that protect them. That’s what we think about: what will happen when...
by Guest Author | May 13, 2026 | Videos
For decades, families in Egypt lived without answers. Since 1997, Dr. Samya Nasr, Professor of Pediatrics and Pediatric Pulmonologist at University of Michigan Health, has worked to raise awareness of cystic fibrosis in Egypt, leading global efforts to improve...
by Guest Author | May 11, 2026 | Podcasts
Bridging Two Countries, One Mission: Cesar and Nora Hernandez Fight for Spanish-Speaking CF Families“When Alex was diagnosed, we felt fear and responsibility. If we had access to information in Spanish, other families should too. No one should feel lost because of...
by Guest Author | May 4, 2026 | Podcasts
I first met Margarete Cassalina when we were hosted for dinner by Bob Emmelkamp at the North American Cystic Fibrosis Conference (NACFC). We connected immediately. There was an ease to our conversation, a shared understanding that doesn’t require much explanation in...
