APPLY — Covering Rare Diseases: Journalist Fellowships and Global Reporting Grants – National Press Foundation

The plight of people living with a rare disease is a critical unmet patient health care need. The statistics are worrying; there are 7,000 rare diseases worldwide affecting 350 million people. Three quarters of people living with a rare disease are children and only half of patients receive an accurate diagnosis. The average time for a patient to be diagnosed with a rare disease is one and a half 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 detection of rare diseases.

The research has been fueled by rapid genome sequencing, precision medicine, cancer research, artificial intelligence and big data analytics – and lessons learned from COVID-19. The advent of new technologies such as RNA-based therapies and CRISPR has sparked optimism for new therapies for rare diseases, many of which are currently incurable.

But covering rare diseases has been a particular challenge for journalists because the word “rare” itself implies that the topic is not of particular interest to mass news audiences.

In fact, rare diseases are not particularly rare in humans – an estimated 8-10% of the world’s population has them. And while 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 for them can easily reach half a billion. people – and advances in diagnosis and treatment can benefit many more.

Following the remarkable success of last year’s program, for the second year the National Press Foundation is offering an online conference for journalists who want to cover rare diseases from October 17-18, 2022. The program is free, registered , and open to journalists worldwide.

The program will consist of online briefings and question-and-answer sessions from the world’s top experts in rare diseases, diagnostics, targeted testing and drug development, as well as leaders from patient and community advocacy groups. journalists who covered the issues.

Application deadline: August 16, 2022

In addition, the NPF will provide up to $3,000 in reporting grants to 20 journalists to cover travel costs and time spent on a rare disease project of their choice. Selected fellows will attend an additional online session on October 19, 2022, with experts and coaches in narrative journalism.

The work of the fellows will first be published in the media chosen by the journalists, then reprinted in a compilation book produced by Ipsen Foundationa Paris-based association that focuses on rare diseases, screening, inclusion and disability.

The volume produced from the work of the 2021 NPF Fellows is available for free download here. The application for 2022 research fellowships and reporting grants are here.


THE SMALL CHARACTERISTICS

Last year’s briefings on rare disease topics are available here. The list of accepted scholarship recipients in 2021 is here.

COMRADES: This is a competitive scholarship for 20 journalists based in any country, provided they can attend the conference during Eastern Daylight Time October 17-19. See details on the application form below. Journalists can work in any medium (print, radio, television, online) and in any language. Manuscripts or links to published works should be submitted in English, French, Spanish, German, Chinese, or Portuguese by December 31, 2022. Translation of works into languages ​​other than English and French will be provided. Broadcast journalists can submit a summary and a link or recording of their story.

The the application deadline is August 16, 2022. Employed journalists will need a letter of support from their editor. Freelance journalists must submit a letter from a media outlet interested in publishing their work.

FINANCIAL AID: Accepted fellows will receive a $1,000 stipend at the end of the conference to fund their travel and reporting expenses. The remaining $2,000 will be paid upon submission of their published work.

Details and application here.

If you have any questions, please contact Program Manager Alyssa Black at [email protected]

Support for this training is under the aegis of the Fondation de France. The FPN is solely responsible for the content.

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