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 to industry for research and development, so as to deliver solutions to meet IRDiRC Goal 2. This will be accomplished through several strategies, including identification of diseases that already respond to most criteria (as examples of “success stories”) and identification of criteria that are specific to particular geographic regions (including funding models, social priorities, etc.). The project will therefore maximize the potential of already existing research, reducing barriers and improving the uptake by industry for therapeutic research investments (e.g., via natural history studies, patient registries, epidemiology studies).
IRDiRC is currently assembling a team of experts to populate this Task Force and is specifically looking for members with the above qualities and expertise/experience in one or more of the following areas:
- Funding rare disease research as a public or private entity
- Involvement in strategic planning for rare disease research
- Personal or family experience with rare diseases and either (a) involvement in funding rare diseases research OR (b) advocacy on behalf of rare disease research OR (c) involvement in corporate investment strategy development/execution (not necessarily in rare disease research)
- Research in rare diseases AND either (a) experience with either corporate interests OR (b) institutional finance/investment strategic planning
- Translation of research results into clinical settings, including Technology Transfer activities
- Evaluation of investment in therapy development from the perspective of small and large companies
The call is closed, IRDiRC would like to thank all the persons that have applied for their interest on our call.