'Rare' diseases: 1 billion reasons to care
Radio Davos
Practical first steps for LMICs
Alexandra recommends recognition, national plans, registries and public–private partnerships for low‑middle income countries.
Rare diseases are not that rare. More than 300 million people have one of the 7,000 rare diseases around the world, and many more people are affected by the impact on their families.
On this podcast we learn more about the personal impact of rare diseases, hear about the World Health Assembly (WHA) Resolution on Rare Diseases which aims to get governments to create action plans, and speak to a private sector company on why it's worth paying more attention to the issue.
Hosts:
Robin Pomeroy, head of podcasts, World Economic Forum
Antonio Estrella, lead, Health For All, Centre for Health and Healthcare, World Economic Forum
Guests:
Will Greene, board member, Foundation for Prader-Willi Research (FPWR)
Alexandra Heumber, CEO, Rare Diseases International:
Soraya Bekkali, senior vice president, Europe, Canada & International Alexion, AstraZeneca Rare Disease.
Links:
White Paper: Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity: https://www.weforum.org/publications/making-rare-diseases-count-how-better-data-can-unlock-a-multitrillion-dollar-opportunity/
Why rare diseases are a proving ground for medical innovation: https://www.weforum.org/stories/2026/01/rare-diseases-and-medical-innovation/
World Health Assembly (WHA) Resolution on Rare Diseases: https://apps.who.int/gb/ebwha/pdf_files/WHA78/A78_R11-en.pdf
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