Introduction Advocacy plays a critical role in accelerating progress in rare diseases. As technology advances, collaboration between patient communities, researchers,…
As our commemoration of Rare Disease Day 2026, we are pleased to present a guest article by Jessica Lynn at…
“The patient voice” is shorthand for patients’ and caregivers’ lived experience—captured in a way that can inform decisions. In other…
On the occasion of international Rare Disease Day 2025, we are beyond thrilled to host the voice of patient advocate…
By Christopher Rudolf, Volv Global Rare disease patients and the journey to diagnosis, treatment, and support For patients with rare…
By Christopher Rudolf, Volv Global Rare disease patients and the journey to diagnosis, treatment, and support For patients with rare…
By Christopher Rudolf, Volv Global Introduction Rare Disease Day highlights the voices, stories, and experiences of millions of people living…