From Isolation to Infrastructure – The Origins of Rare Disease Networks (blog 1/5)
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
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
In rare diseases, patients aren’t on the sidelines – they are central partners. Their lived experience fills critical evidence gaps and shapes what “meaningful outcomes”
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
Erin Paterson shares her experience of being gene positive for the rare Huntington disease, and how she is on a mission to positively impact other
Our Research Consultant Andrew Grant advocates for awareness of the physical and mental issues patients face while their condition remains undiagnosed Getting a diagnosis when
LDA Research is supporting CureLONP1.com Aria’s Miracle research fund and her parent’s conviction that hope lies within the global medical and scientific community Aria’s parents need to
LDA Research talks to Rare Disease Girl Taylor Coffman, about action and advocacy for patients worldwide with rare diseases, in support of Rare Disease Day