Rare Disease Reporting Fellowship 2023

The National Press Foundation is offering an online conference for journalists who wish to cover rare diseases from Nov. 13-17, 2023. The training is free, on the record, and open to journalists anywhere in the world.

The program will offer online briefings and Q&A sessions with leading authorities on rare diseases, diagnostics, focused testing, and medication development, as well as with executives of patient advocacy groups and journalists who have written extensively about these topics. In fact, 8% to 10% of people worldwide are thought to have a rare condition, making it not all that uncommon. While the number of people with a given rare disease in each nation is frequently small, when all people with that disease and those who care for them are considered, the number of people with rare diseases could easily reach half a billion, with the potential for even greater benefits from advances in diagnosis and treatment.

However, there is one significant obstacle that must be overcome. In many Western nations, living with a rare disease is challenging, but what about areas of the world where access to medical research and resources is limited? How can science finally make strides in including individuals from various ethnic backgrounds in clinical trials for potential treatments? Equity in access to research, care, and advocacy is the main problem. Journalists can assist in disseminating knowledge and skills in the field of detecting uncommon diseases, which is urgently needed by communities all over the world.

The National Press Foundation is a 501(c)(3) nonprofit whose mission is to “make good journalists better.” The foundation trains journalists to use the newest reporting tools and techniques while educating them on the difficult issues of the day. Through its prizes and fellowships, the organization rewards and promotes excellence in journalism. Since 1976, the foundation has offered thousands of editors, producers, and reporters on-site professional development opportunities to help them better comprehend and articulate the impacts of public policy on readers and viewers. Every NPF program is open and free to the public. Under Resources, you can view recordings and summaries of hundreds of expert briefings.