Call for Members: IRDiRC Task Force on Disregarded Rare Diseases (PLUTO PROJECT)

The Therapies Scientific Committee (TSC) is establishing a Task Force to characterize specific commonalities amongst a large group of “disregarded” rare diseases, with the potential secondary aims to identify removable roadblocks that may foster future research and development.

The PLUTO project aims at using an integrated database search approach to:

1. identify and classify the groups of rare diseases that are currently under-represented by academic research and industrial development alike,
2. determine what characteristics they have in common, and – through this analysis –
3. to understand what are the roadblocks that are preventing the chances of seeing effective treatments being developed in the near future.

Based on the results of this analysis, the working group also aims at providing potential recommendations to policy makers, funders and developers to overcome existing limitations and roadblocks for research and development for these “disregarded” diseases.

Therefore, the TSC is specifically looking for members to populate the Task Force with the below expertise in one or more of the following areas:

• Drug developers (public and private, for/ no profit)
• Scientists / Clinicians
• Public or private rare disease research funders
• Regulators, Rare Disease Policy
• Patient Advocates

If you are interested in taking part in this activity: Please send a CV, biosketch and letter of motivation (one paragraph each) to the Scientific Secretariat (scisec-irdirc [at] ejprarediseases.org) before the 11^th of February 2022.

Importantly, do not forget to add in the subject of your email the reference of the project (Ref: TF-IRDIRC-Pluto).

Only selected candidates will be contacted. Other applications will be kept for potential future use.