The 20 journalists who were selected as National Press Foundation’s “Covering Rare Diseases” fellows in 2021 have had their work published in the book “Living with a Rare Disease Worldwide.”

Covering rare disease can be a challenge for journalists because the word “rare” implies the topic is not of particular interest to mass-market audiences. However, there are 7,000 rare diseases in the world that affect 350 million people.

In September 2021, fellows took part in a three-day online training that briefed journalists about recent scientific progress in understanding, diagnosing and treating rare disease, and how to write about them with nuance and sensitivity. The 20 journalists also received grants that allowed them to travel to report on stories they deemed most important to their audiences.

The 180 page book –  available both digitally and physically – compiles the resulting extraordinary reporting that took form as newspaper, magazine and science journal articles, video, online stories, radio broadcasts and photographs.

For a second year, The National Press Foundation, in partnership with Fondation Ipsen, is hosting a Rare Diseases Fellowship. Apply by August 16 to be considered for a $3,000 reporting grant and briefings from top experts.

In addition to the fellowship, The National Press Foundation is hosting a free, online conference from Oct. 17-19, 2022 for journalists around the world for journalists who wish to cover rare diseases.