Author:
Monaco Lucia,Letinturier Mary Catherine V.,Aketa Naohiko,Athanassiou Dimitrios,el Hajjar Jida,Frost Simon,Granados Alicia,Haight Anthony R.,Jonker Anneliene H.,Kahn Susan R.,Kang Sukhun,Kritikou Persefoni,Kyriakopoulou Christina,McMaster Christopher,Parker Samantha,Scherman Daniel,Valentine Nivedita,Wiafe Samuel,Hartman Adam L.
Abstract
The complexity of the funding landscape for rare diseases (RD) research is due to many factors. Each type of funder has strategic goals guiding its investments. The International Rare Diseases Research Consortium (IRDiRC) convened RD experts to explore contributing factors and investment principles in RD funding. This report includes the Task Force’s findings. Similar to IRDiRC’s previous work on motivating factors for company investments in RD research, the current Task Force found that return on investment (ROI) was a guiding principle. However, within the broader RD funding landscape, the definition of ROI varied between types of funders. While they shared funding requirements (e.g., scientific quality, health economics), funders employed both major investment and venture-type instruments, demonstrating the ongoing need for flexibility in supporting RD funding. These observations warrant further analysis of the interactions and partnerships among all actors of RD research and the sustainability of RD research funding.