Data harmonization and sharing challenges

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

Related podcasts:

How Africa is harnessing tech to deliver healthcare: https://www.weforum.org/podcasts/radio-davos/episodes/africa-cdc-health/

More than just a toothache: how to tackle the huge costs of poor oral health: https://www.weforum.org/podcasts/radio-davos/episodes/dental-oral-health-crisis/

Neurotechnology could help billions of people. Has its time come?: https://www.weforum.org/podcasts/radio-davos/episodes/neurotechnology-jen-french-tom-oxley/

How one global health leader prepares teams for the unexpected: Gavi CEO: https://www.weforum.org/podcasts/meet-the-leader/episodes/sania-nishtar-gavi-preparation-global-health/

Bridging the gap in women's health research, policy and innovation: Kearney: https://www.weforum.org/podcasts/meet-the-leader/episodes/paula-bellostas-muguerza-kearney-womens-health/

Check out all our podcasts on wef.ch/podcasts:

YouTube: https://www.youtube.com/@wef

Radio Davos - subscribe: https://pod.link/1504682164

Meet the Leader - subscribe: https://pod.link/1534915560

Agenda Dialogues - subscribe: https://pod.link/1574956552