Advocacy in rare disease: Driving technology advances – 2023 Webinar
Introduction Advocacy plays a critical role in accelerating progress in rare diseases. As technology advances, collaboration between patient communities, researchers, healthcare systems, and innovators becomes essential to shorten diagnostic delays and ensure scientific breakthroughs translate into real patient benefit. This webinar discussion brought together experts from across healthcare, policy, and industry to explore how data […]
Reflecting on Rare Disease Day: Awareness is an Act of Love – Guest Article by Rareatives
As our commemoration of Rare Disease Day 2026, we are pleased to present a guest article by Jessica Lynn at Rareatives. Introduction Rare Disease Day highlights the voices, stories, and experiences of millions of people living with rare conditions worldwide. Awareness plays a critical role in improving diagnosis, research, and support for the rare disease […]
The Patient Voice and AI-Driven Healthcare – Guest Article by Rare Patient Voice
“The patient voice” is shorthand for patients’ and caregivers’ lived experience—captured in a way that can inform decisions. In other words, the patient voice is the “why” behind clinical, operational, and real-world patterns—turning observations into decisions that better align with patient needs. We are pleased to present a guest article on the patient voice by our friends […]
Bernd and Ben’s Experience: Alström Syndrome and their intertwined journey on how to live their best lives
By Christopher Rudolf, Volv Global Rare disease patients and the journey to diagnosis, treatment, and support For patients with rare diseases, the journey from dealing with symptoms to diagnosis and eventually – where possible – to treatment is a painfully slow one. Most find their conditions are unknown or poorly understood, that the effect on […]
Tamsyn’s Experience: Poland Syndrome and the problems beyond diagnosis
By Christopher Rudolf, Volv Global Rare disease patients and the journey to diagnosis, treatment, and support For patients with rare diseases, the journey from dealing with symptoms to diagnosis and eventually – where possible – to treatment is a painfully slow one. Most find their conditions are unknown or poorly understood, that the effect on […]
Paul’s Experience: Narcolepsy and diagnosis – an 8 year odyssey
By Christopher Rudolf, Volv Global Introduction Rare Disease Day highlights the voices, stories, and experiences of millions of people living with rare conditions worldwide. Awareness plays a critical role in improving diagnosis, research, and support for the rare disease community. In this guest article, Jessica Lynn, founder of Rareatives, reflects on her personal journey and […]