How to improve the diagnosis and treatment of rare diseases?

Details

Supervisors

Belleflamme, Paul

Faculty

Louvain School of Management

Degree label

Master [120] en sciences de gestion, à finalité spécialisée

Abstract

Rare diseases affect between 350 and 475 million people globally, according to the estimation of the World Economic Forum. Approximately half of those people are children. Those numbers pose extraordinary challenges for patients, caregivers and the healthcare system. Although individually uncommon, these diseases collectively impact millions, yet more prevalent conditions often overshadow them in terms of research funding, public awareness, and policy focus. This causes severe difficulties for patients, such as delays and challenges in accessing adequate diagnosis, creating prolonged diagnosis journeys; they can also encounter insufficient access to specialised care, and as a result, this can cause high economic burdens on their families but also on society. This lack of attention to rare diseases causes a slowdown in research and innovation and thus creates a cycle of underdiagnosis and inadequate treatment. This thesis aims to provide a comprehensive business plan for the proposed platform, it covers its development, launch, and long-term sustainability. This research presents actionable strategies for creating and capturing value, drawing from various academic and industry sources. The analysis is structured into three key sections: Uncover Value, Create Value, and Value Capture.