The National Press Foundation is offering an online conference for journalists who wish to cover rare diseases from Nov. 13-17, 2023. The training is free, on the record, and open to journalists anywhere in the world.

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.

NPF will also give up to $3,000 in reporting grants for participating journalists to cover travel expenses and time in executing a rare diseases project of their choosing.

Rare disease is actually 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.

For the more than 300 million people worldwide who live with a rare disease, the explosive growth of gene therapies and biotech advances has offered glimmers of hope. Families who struggle to identify these ailments, find appropriate care and tap into advocacy resources take encouragement from these advances, which could benefit patients—three-quarters of whom are children.

But 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.

The fine print:

Employed journalists will need a letter of support from their editor, which includes a commitment to allow time off equivalent to the fellowship hours. For example, programming will run for roughly four hours per day Nov. 13-17 to accommodate waking hours in most time zones; journalists should be given four hours off of work on those days. This is to ensure full participation.

Freelance journalists should submit a letter from a news outlet interested in publishing their work.

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 (stories published after this date may not be eligible).

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.

The volume produced from the 2021 NPF fellows’ work is available for free download here.

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 questions, please contact program manager Alyssa Black at ablack@nationalpress.org.

This training is sponsored by Fondation Ipsen. NPF is solely responsible for the content.