Making Rare 
Diseases Count

A call for solutions to use improved data, diagnostics and digital tools to enhance how rare diseases are identified, understood and managed. It aims to make these conditions more visible, diagnosable and actionable across health systems, while improving patient outcomes, strengthening evidence generation and accelerating progress in care, research and innovation.

Overview

Rare diseases are individually uncommon but collectively affect more than 300 million people worldwide. When families and caregivers are included, the number directly impacted rises to more than 1 billion people, and the total global cost is estimated at more than $7 trillion annually. Yet around 95% of rare diseases still have no treatment authorised by a major regulatory agency, and many patients still face long diagnostic journeys, fragmented care and limited visibility in health systems.

This Challenge builds on insights from the World Economic Forum's white paper, Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity, which highlights a central issue: rare disease data is often fragmented, incomplete and difficult to use, limiting earlier diagnosis, coordinated care, evidence generation and investment. In response, this Challenge, led by UpLink and the World Economic Forum's Health For All Initiative, seeks early-stage start-ups with innovative products that strengthen foundational rare disease data, accelerate earlier detection and diagnosis, enable patient-centred evidence, and unlock secure data sharing and AI-powered insights. By improving visibility and actionability across the rare disease landscape, these solutions can help improve outcomes for patients, reduce avoidable costs and accelerate progress across healthcare systems.
 
Th Challenge is part of the UpLink Innovation Challenge Series – Spring 2026, a global call for early-stage solutions ready to move from innovation to real-world deployment at scale, shaping the markets, industries and systems of tomorrow. 

How Better Data can Unlock a Multitrillion-Dollar Opportunity

Rare diseases affect more than 300 million people worldwide and remain one of the largest areas of unmet need in global health. Explore this white paper for global insights.

Focus areas

Build the data infrastructure that makes rare diseases visible

Solutions that standardize, capture or structure rare disease data across systems, including registries, coding, minimum datasets and tools in a manner that enables privacy-preserving data sharing and interoperability.


Accelerate diagnosis through screening, genomics and clinical intelligence

Solutions that shorten diagnostic journeys through newborn screening, genomic testing, clinical decision support or clinician education, helping patients access care earlier and more efficiently.

Turn lived experience into credible evidence for care and innovation

Solutions that enable patients and caregivers to contribute structured, trusted data on symptoms, outcomes and quality of life to improve research, care design and access decisions.

Selection criteria






This challenge is now closed for new applications.

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Benefits for selected UpLink Ventures

Access

Participation in World Economic Forum and partner-led events, projects and communities.

Visibility

Global exposure via the Forum’s and UpLink’s digital media channels.

Connections

Strategic introductions to select organizations across the Forum’s networks.

Challenge timeline

22 April 2026

Challenge launch


22 April - 
29 June 2026

Open for submissions


June 2026 -
August 2026

Review and selection process


August 2026

Pitch event for shortlisted candidates


January 2027

Cohort announcement


2027

Cohort programme


In collaboration with the World Economic Forum's Health For All Initiative