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1、Making Rare Diseases Count:How Better Data Can Unlock a Multitrillion-Dollar Opportunity W H I T E P A P E R F E B R U A R Y 2 0 2 6In collaboration with Alexion,AstraZeneca Rare Disease DeloitteImages:Getty ImagesDisclaimer This document is published by the World Economic Forum as a contribution to

2、 a project,insight area or interaction.The findings,interpretations and conclusions expressed herein are a result of a collaborative process facilitated and endorsed by the World Economic Forum but whose results do not necessarily represent the views of the World Economic Forum,nor the entirety of i

3、ts Members,Partners or other stakeholders.2026 World Economic Forum.All rights reserved.No part of this publication may be reproduced or transmitted in any form or by any means,including photocopying and recording,or by any information storage and retrieval system.ContentsForeword 3Executive summary

4、 41 Why investing in rare diseases matters 51.1 The human impact of rare diseases 71.2 Reducing costs and unlocking economic gains 91.3 Advancing scientific discovery and healthcare innovation 101.4 The virtuous cycle:How rare disease investments compound 122 Unlocking impact with better data:Five s

5、trategies for success 132.1 Define and track a minimum dataset across countries 142.2 Strengthen patient engagement in data collection 152.3 Improve newborn screening and diagnostic capacity 172.4 Enable trusted data sharing across health systems 192.5 Use AI and digital tools to address evidence ga

6、ps 213 Tailoring strategies to local contexts 233.1 Building healthcare system capacity in LMICs 243.2 Maximizing impact in high-income countries 26Conclusion 28Contributors 30Endnotes 32Making Rare Diseases Count:How Better Data Can Unlock a Multitrillion-Dollar Opportunity2ForewordRare diseases ar