The plight of persons living with a rare disease is a critical unmet need of patients in healthcare. The statistics are concerning; there are 7000 rare diseases in the world that affect 350 million people. Three-quarters of persons living with a rare disease are children and only half of patients receive an accurate diagnosis. The average delay for a patient to receive a diagnosis with a rare disease is 1 1/2 years. One in four patients living with a rare disease waits four years for an accurate diagnosis. There is an urgent need to communicate knowledge and expertise in the field of rare disease detection.
Research has been fueled by rapid genome sequencing, precision medicine, cancer research, artificial intelligence and big-data analysis — and the lessons learned from COVID-19. The advent of new technologies such as RNA-based therapies and CRISPR has prompted optimism for new therapies for rare diseases, many of which are currently untreatable.
But covering rare diseases has been a particular challenge for journalists because the word “rare” itself implies that the topic isn’t of particular interest to mass-market news audiences.
In fact, rare disease is not particularly rare among humans – an estimated 8% to 10% of the global population has one. And though the number of people diagnosed with a particular rare disease in each country is often small, taken together, the number of rare disease patients and those who love and care of them may easily number half a billion people – and the advances being made in diagnosis and treatment may benefit far more.
After the remarkable success of last year’s program, for the second year, the National Press Foundation is offering an online conference for journalists who wish to cover rare diseases from Oct. 17-19, 2022. The program is free, on the record, and open to journalists from around the world.
The program will consist of online briefings and question-and-answer sessions from top world experts in rare diseases, diagnostics, targeted testing and drug development, as well as from leaders of patient advocacy groups and journalists who have been covering the issues.
In addition, NPF will offer up to $3,000 in reporting grants to 20 journalists to cover travel expenses and time in executing a rare diseases project of their choosing. Those selected fellows will attend an additional online session on Oct. 19, 2022, with experts and coaches in narrative journalism.
Fellows’ work will be published first in the journalists’ chosen outlets, then reprinted in a compilation book produced by Fondation Ipsen, a Paris-based nonprofit that focuses on rare diseases, detection, inclusion and disability.
The volume produced from the 2021 NPF fellows’ work is available for free download here. The application for the 2022 fellowship and reporting grants is here.
THE FINE PRINT
Last year’s briefings on rare disease topics are available here. The list of fellows accepted in 2021 is here.
FELLOWS: This is a competitive fellowship for 20 journalists based in any country, as long as they can attend the conference during Eastern Daylight Time from Oct. 17 to 19. See details on the application form below. Journalists may be working in any medium (print, radio, TV, online) and any language. Manuscripts or links to published work must be submitted in English, French, Spanish, German, Chinese or Portuguese by December 31, 2022. Translation for works in languages other than English and French will be provided. Broadcast journalists may submit a summary and a link or recording of their story.
The application deadline is August 16, 2022. Employed journalists will need a letter of support from their editor. Freelance journalists should submit a letter from a news outlet interested in publishing their work.
FINANCIAL SUPPORT: Accepted fellows will receive a $1,000 stipend on completion of the conference to fund their travel and reporting expenses. The remaining $2,000 will be paid upon submission of their published work.
For questions, please contact program manager Alyssa Black at ablack@nationalpress.org.
Support for this training is under the aegis of Fondation de France. NPF is solely responsible for the content.