IRDiRC is delighted to announce the new leadership on the Funders Constituent Committee (FCC), Dr Adam Hartman, NIH, as Chair and Dr Catherine Nguyen, INSERM, as Vice-Chair. Dr Hartman and Dr Nguyen will be in charge for the next three years. The Committee mission is to facilitate high-level coordination of funding initiatives to maximize the impact […]
Call for Candidates – Closed
Chrysalis Project The Funders Constituent Committee (FCC) has set up a jointly Task Force with the Companies Constituent Committee (CCC) and the Patient Advocates Constituent Committee (PACC). The overarching goal of the Chrysalis Project is to identify key criteria (in terms of investments of time and resources) that would make rare diseases research more attractive […]
Rare Diseases Are Not Rare! Challenge
The Rare Diseases Are Not Rare! Challenge is a competition sponsored by the National Center for Advancing Translational Sciences (NCATS), which is part of the National Institutes of Health. We are asking entrants to use their creativity to raise awareness.This is an opportunity that combines art, science and medicine with the hope that it will bring enjoyment […]
A message to the Rare Disease community
Dear All, While the COVID-19 pandemic is spreading through the world, we wish to send a message to the IRDiRC community and express our nearness and encouragement to you all.The impact of COVID-19 outbreak on rare disease patients cannot be underestimated; not only their condition makes them frailer if infected, but also the exceptional burden […]
Building Block Forms – DEVELOPMENT RESOURCES
Legend: E = EuropeI = International J = JapanU = USA
Building Block Forms – HTA and REIMBURSEMENT
Legend: E = EuropeI = International J = JapanU = USA
Chrysalis Project Task Force
Art by Davide Bonazzi www.davidebonazzi.com Introduction This project will identify key criteria that would make rare disease research more attractive to industry for research and development. In order for industry to initiate or continue research into rare diseases, it must overcome barriers specific to the nature of rare disease research. We expect that certain minimum […]
Have your say and contribute to the strategic research agenda for a Public-Private Partnership for Health Innovation under Horizon Europe!
The goal is to create a unique platform that does not exist anywhere else, a European multi-sector Partnership for health innovation Five industry associations representing pharmaceutical, biotech and medical technologies industries operating in Europe (COCIR, EFPIA, MedTech Europe, EuropaBio and Vaccines Europe) have come together to work on a Strategic Agenda for Innovation in Healthcare. This Agenda […]
Identification of barriers to patient participation in RD research and recommendations to remove them
Introduction There is a need to determine how best to empower and enable patient participation in RD research. Therefore, the Patient Advocacy Constituent Committee (PACC) wants to take advantage of the players within IRDiRC who represent a broad swath of stakeholders within RD research and are already committed to the IRDiRC mission and effort, as […]
Funders Constituent Committee (FCC)
The IRDiRC Funders Constituent Committee (FCC) brings together representatives from the public research funding members of IRDiRC, which include national and international governmental and non-profit funding bodies. The FCC’s principal mission is to facilitate high-level coordination of funding initiatives to maximize the impact of rare diseases research projects by aligning strategies, avoiding unnecessary duplication, and […]