Living with a Rare Disease Worldwide. Volume 1

This book was produced with the help of the National Press Foundation, which selected and trained 20 international journalists from all continents. These journalists took part in 2 days of training on rare diseases (diagnosis, treatment, therapy) in order to better report this topic to the general public. They have produced one or more articles (written press, video or podcast), published in their respective newspapers. All of this work educate on how patients, around the world, live with a rare disease. As these pages go along, we realize that poverty does not allow patients to access primary care. Moreover, beliefs sometimes lead to the exclusion and stigmatization of patients.

About The National Press Foundation

The National Press Foundation is a 501(c)(3) whose mission is to “make good journalists better.” We educate journalists on the complex issues of the day and train them to use the latest reporting tools and techniques. The foundation recognizes and encourages excellence in journalism through its awards and fellowships.

Since 1976, the foundation has provided in-person professional development opportunities to thousands of editors, producers and reporters, helping them better understand and explain the effects of public policy on readers and viewers. All NPF programming is free and on the record.

National Press Foundation is funded by journalism organizations, foundations, corporations and individual benefactors. We are grateful to our funders who are listed here.

Prior to the novel coronavirus, NPF programs were held in the nation’s capital, around the United States and overseas. During the global pandemic, we are offering all-virtual training, and continuing to bring journalists together with leading authorities to discuss significant issues ranging from health and economics to politics and policy. NPF produces digital curriculum from these fellowships and briefings that are posted to our website, allowing journalists across the world to access the best expertise and enhance their reporting.

Journalists are currently under fire, overworked, underpaid, and too often threatened with violence. The landscape for media continues to deteriorate with widespread layoffs, newsroom closures, mistrust, and disinformation. Against this grim background, the National Press Foundation’s mission—making good journalists better—has become more necessary than ever.

Website: www.nationalpress.org

About the collaboration

The National Press Foundation and Fondation Ipsen plan to select and train a delegation of the world’s leading journalists to focus on Rare diseases. The goal of this meeting is to connect leading Science journalists to patients, scientists, caregivers and patient groups.

The National Press Foundation and Fondation Ipsen will select a group of international journalists to participate in a four-day training program to offer them the opportunity to interact with scientific experts and learn better ways to communicate information on rare diseases to the general public (detection, diagnosis, molecular biology, symptoms, etc.). The convening will reveal newly published scientific information and facilitate interaction between journalists, scientists and patients.

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