Regulation, by its nature, is cautious. Agencies tasked with protecting public health are not designed to move fast; they are designed to be rigorous. Yet
For most of the twentieth century, the pharmaceutical industry’s relationship with rare diseases could be summarised in a single phrase: studied indifference. The economics were
As medical market research has moved increasingly online, and as social media has widened access to recruitment opportunities, fraud prevention has become more important than
Across the world, an estimated 300 to 400 million people live with a rare disease. Yet for most of the twentieth century, these individuals lived
The Day Something Felt “Not Quite Right” One ordinary day, I suddenly had a nosebleed. That alone isn’t unusual—I’ve had them before. But this time,
By Leigh Hart, Senior Moderator @ LDA Research Rare diseases affect an estimated 300–400 million people worldwide, yet progress in diagnosis and treatment has historically
At LDA Research, we know that behind every data point is a real person, a real family, and a real story. We’re sharing one of
If 2024 was the year medicine proved that steady, methodical progress could deliver profound impact without spectacle, 2025 is the year those advances began to
At LDA Research, we know that behind every data point is a real person, a real family, and a real story. We’re sharing one of
Senior moderator Leigh Hart explores the role of pharmaceutical companies in the Rare Disease Networks, what was planned and how it has worked out. Rare
This Chronic Disease Awareness Day patient advocate Roxanne Murray strives to ensure no one is left unseen or unheard in the MS, chronic illness and
Issy Clegg examines healing with pride: What LGBTQ+ activism gave to healthcare – and what’s still missing Despite a history of oppression members of the
