Covering Rare Diseases with Sensitivity
Patients with rare diseases are much more than their conditions
An editor offers tips on phrases to avoid – and stories to cover. A father explains how patient advocacy led to new gene therapies.
AI Driving Breakthroughs on Rare Diseases
Deep Learning, Genomics Spur Advances in Understanding and Hope for Treatment
But journalists should also focus on regulation of the AI and electronic medical records that underlie biotech gains.
Governments Spur Rare Disease Treatments
US and EU Laws Have Led to Rare Disease Gains
In the U.S., the Orphan Drug Act incentivizes drugmakers to develop drugs for rare disease patients, including 31 in 2020.
Rare Diseases: A Global Challenge
When Each Nation Has Few Cases of Each Disease, Collaboration Is Key
From Ghana to Australia, rare disease researchers and patient groups prod their governments to action — and international cooperation.
Rare Diseases: Small Numbers, Big Problem
They Escape Notice, but ‘Rare’ Diseases Are Anything But
Nearly 8% of the world’s population — 350 million people — have a rare disease. But diagnosis and treatment are advancing.
