Living with a Rare Disease Worldwide. Volume 3

“Advances in artificial intelligence and biotechnology have spurred excitement in rare disease communities in the past year. The emergence of a revolutionary treatment for sickle cell disease, using the innovative gene-editing therapy CRISPR, signaled the possibility of additional advances that could help the more than 300 million people worldwide living with complex, mystifying and devastating illnesses.
Yet this progress comes in stark contrast to the reality that many rare disease patients worldwide face: a lengthy quest to get a correct diagnosis followed by the excruciating challenge of finding and affording treatment.
This disparity was at the center of the National Press Foundation’s 2023 “Covering Rare Disease” journalism fellowship, held online November 13-17 thanks to the generous sponsorship of Fondation Ipsen.”
Anne Godlasky (President, National Press Foundation, Washington D.C.)
Rachel Jones (Director of Journalism Initiatives, National Press Foundation)

“One of the great challenges faced by people living with rare diseases is that the public knows so little of their struggles, challenges, and the need for unrelenting resilience in a world that doesn’t understand. Coupled to the 300 million people living with rare diseases are hundreds of millions of caregivers who sacrifice time, work and money in the name of love. Working with the National Press Foundation, top world journalists highlight in these writings the plights of patients living with rare diseases and those who care for them. The stories are informative, dramatic, and heart-rending. I thank most the patients living with rare diseases and the people who love them for sharing their stories with these gifted journalists.”
James A. Levine (MD, PhD, Professor, President, Fondation Ipsen, Paris)

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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