Five-Day Online Conference: Rare Disease Reporting Fellowship

The program will provide online briefings and question-and-answer sessions with top experts in rare diseases, diagnostics, targeted testing and drug development, as well as from leaders of patient advocacy groups and journalists who have covered these issues extensively.

There’s still one major challenge that cannot be ignored. Life with a rare disease in many Western countries is difficult, but what about regions of the world where research and medical resources are scarce? How can science finally make progress in ensuring that clinical trials for proposed treatments include people from diverse ethnic backgrounds?

The key issue is equity – in access to research, treatment and advocacy. There is an urgent need to communicate knowledge and expertise in the field of rare disease detection, and journalists can help deliver that knowledge to communities around the world.

Benefits

• Of the $3,000 grant, $1,000 will be provided at the conclusion of the training for fellows who attend all virtual sessions. An additional $2,000 will be provided upon publication of the project no later than Feb. 29, 2024.
• Fellows’ work will be published first in the journalists’ chosen outlets, then reprinted in a compilation book produced by Fondation Ipsen, the program’s sponsor and a Paris-based nonprofit that focuses on rare diseases, detection, inclusion and disability.

Criteria

• Freelance journalists should submit a letter from a news outlet interested in publishing their work.
• Journalists may work 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 Feb. 29, 2024 (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.

For more information, visit NPF.