Radio Davos 'Rare' diseases: 1 billion reasons to care
Feb 26, 2026
Soraya Bekkali, SVP at Alexion/AZ who builds global rare‑disease partnerships; Alexandra Heumber, CEO of Rare Diseases International and global advocate; Will Greene, caregiver-advocate and FPWR board member driven by family experience. They discuss why rare diseases affect millions, the WHO resolution and national action plans, the power of better data and registries, and how research fuels medical innovation.
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Collective Scale Makes Rare Diseases A Public Health Issue
- Rare diseases are individually uncommon but collectively affect over 300 million people and touch roughly a billion including families and caregivers.
- Antonio Estrella framed the scale to argue rare disease should be treated as a major public-health category, not isolated cases.
Monthlong Diagnostic Odyssey And Family Relocation
- Will Greene described his diagnostic odyssey after his son was born floppy, unable to cry or drink and taken to neonatal ICU, receiving a Prader-Willi diagnosis after about a month.
- He and his wife then left jobs and relocated countries to secure better insurance, care, and community for their child, illustrating family-level disruption.
Sustained Patient Group Funding Transformed Outcomes
- Will Greene described the Foundation for Prader-Willi Research's $28 million investment since 2003 to fund research, tools, and community building.
- He credited that sustained funding and community urgency with transforming Prader-Willi prognosis and creating new hope.