Rare diseases are everywhere, and yet people who have them often feel utterly alone.
The possibilities for diagnosis and treatment for some 300 million rare disease patients around the world are advancing rapidly. Progress is being driven by an explosion in medical learning in such fields as rapid genome sequencing, precision medicine, cancer research, artificial intelligence and big-data analysis — and the lessons learned from COVID-19.
To help journalists understand a story that is both hidden and everywhere, the National Press Foundation is offering an online fellowship in covering rare diseases in Fall 2021, followed by up to $3,000 in reporting grants to support journalists in executing a project of their choosing.
The program will include online briefings from top world experts in rare diseases, diagnostics, massive parallel genomic sequencing, artificial intelligence and medical ethics; leaders of patient groups; and special sessions on the craft of medical journalism and storytelling.
Fellows will then receive grants of up to $3,000 to support reporting projects focused on rare diseases anywhere in the world. Fellows’ work will be published or broadcast 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, inclusion and disability.
Background on Rare Diseases: From Aarskog Syndrome to Zollinger-Ellison Syndrome, each disease is unique, its patient numbers small enough to escape the public’s attention. But taken together, they represent a massive medical and human story: The National Institutes of Health in the United States estimates there may be as many as 7,000 rare diseases, affecting between 25 million and 30 million Americans. European experts report similar numbers of diseases and patients.
Rare diseases are commonly misdiagnosed, and most patients wait more than two years to get a diagnosis. And the stigma for patients with a “mystery disease” can be terrible. Seventy percent of these diseases affect children; a quarter are not genetic. Yet although treatment is more possible than ever, many doctors don’t know about rare diseases. Patients don’t know. And journalists don’t know.
PROGRAM DETAILS: The program will begin Sept. 13-14, with webinars open to all that will bring global experts to talk about the prevalence of rare diseases and how they are often misdiagnosed; how artificial intelligence and big data are being used to accelerate diagnosis and treatment of rare diseases; how regulators in the U.S. and the EU support the development of treatments through mechanisms such as the Orphan Drug Act; how patients and their families organize to prod government and industry to focus on their ailments; and whether advances in diagnosis and treatment will widen existing racial disparities in medical care.
FELLOWS: This is a competitive fellowship for 20 journalists who may be based anywhere in the world, as long as they can attend the conference during Eastern Daylight Time. See details on the application form below. Fellows will attend the briefings on Sept. 13-14, participate in additional sessions with expert speakers, and attend a special program on Sept. 24 with top journalists about medical reporting and storytelling techniques.
FINANCIAL SUPPORT: The 20 fellows selected by the National Press Foundation will also receive funding to help them execute stories on rare diseases. Each fellow will receive a $2,000 reporting grant, independent of any salary or freelance fee they receive for publishing the story. Each fellow will also receive up to $1,000 in reimbursement for economy-level travel expenses. (Alcohol is non-reimbursable. Payment will be in U.S. dollars. )
PUBLICATION: Fellows are expected publish or broadcast their stories in their outlets or on the freelance market by Dec. 31, 2021. NPF and Fondation Ipsen will retain secondary rights to the work and will publish them in a compilation volume in 2022. Manuscripts of the work must be submitted in English, French, Spanish, German, Chinese or Portuguese. 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 Aug. 16. 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.
Details and application here.
Support for this training comes from Fondation Ipsen, a French non-profit under the aegis of Fondation de France. NPF is solely responsible for the content.