National Press Foundation Fellows Learn from James Levine: Telling Rare Disease Stories with Heart and Science

By Evans Jona

Millions of people worldwide live with rare diseases, conditions so uncommon that many remain undiagnosed, misunderstood, and invisible to the public. Yet during the 2025–2026 National Press Foundation (NPF) Rare Disease Reporting Fellowship, journalists from across the globe gained firsthand insight into the complex scientific and human landscapes of rare diseases, guided by James Levine, President of Fondation Ipsen.

“This is a massive unmet medical need,” Levine told fellows, emphasizing the dual responsibility of science and storytelling. Fondation Ipsen, a nonprofit organization, supports education, advocacy, and research for rare diseases, reaching millions through publications, digital platforms, and collaborations with over 240 organizations worldwide.

The NPF Rare Disease Reporting Fellowship, now in its latest 2025–2026 cohort, selects accomplished journalists and emerging reporters to deepen their understanding of rare disease science, advocacy, and policy. The program provides fellows with unparalleled access to leading experts, patient communities, and real-world case studies, equipping them to tell stories that can shape public awareness, policy, and global funding priorities.

Levine’s session, Reimagining the Future: Communicating What’s Possible in Rare Disease Innovation, outlined the critical role journalists play in bridging science and society. Rare disease stories are often buried under technical jargon, delayed diagnoses, and fragmented healthcare systems.

“The oxygen of science is suffocated in jargon,” Levine said. “Your journalistic capacity is the oxygen we need in the rare disease community.”

Journalists were urged to report with precision and heart, balancing complex scientific advances, gene therapies, with the human stories of patients and caregivers. Levine highlighted the courage and resilience of people living with rare diseases, from Claude, who ran 55 kilometers for his birthday despite his condition, to Maxine, an author with autism, and Sophia, a student in Cape Town whose only educational resource is a rare disease advocacy magazine reaching 300,000 children.

Levine addressed common myths and misconceptions: rare diseases are not always congenital, not always visible, and even when treatments do not exist, hope remains through supportive therapies and emerging innovations. Journalists were provided with a practical framework for impactful storytelling, emphasizing the importance of working closely with rare disease associations and using trusted scientific sources such as PubMed.

Fellows also explored challenging ethical questions raised by patients themselves, including how to share personal stories without fear of stigma, and how to balance hope with the risk of false expectations in regions with low scientific literacy. Levine emphasized that each story matters, not only for raising awareness but for shaping policy, funding, and access to therapies worldwide.

“This fellowship equips journalists to be the bridge between science and society,” Levine said. “Report with your heart, report with your mind, and help us mobilize impact.”

For the journalists at the National Press Foundation fellowship, rare diseases are more than medical conditions, they are human stories waiting to be told, understood, and acted upon. Through careful, compassionate reporting, these fellows now have the tools to make the invisible visible, bringing hope and understanding to millions.

Evans Taurai Jona is a proud fellow of the 2025–2026 National Press Foundation Rare Disease Reporting Fellowship, joining a global cohort of journalists dedicated to telling these vital stories with both scientific rigor and humanity.