The International Rare Diseases Research Consortium (IRDiRC) was launched in 2011 to accelerate medical breakthroughs for people affected by rare diseases.
It establishes a network of research funders – national and international governmental and non-profit funding bodies, as well as pharmaceutical and biotech companies to engage and participate in collaborative actions thus contribute towards IRDiRC objectives.
Its membership is also open to umbrella organizations of patient advocacy groups that represent broad patients’ interests for all rare diseases in at least one country or larger area, ensuring patients’ needs are taken in consideration when planning their research programmatic activities.
Benefits of the consortium membership include:
- Access to an international network of stakeholders active in the field of rare disease
- Representation on the Consortium Assembly and Constituent Committees
- Participation in a Scientific Committee and/or Task Force, according to expertise
- Involvement in setting out policies, guidelines, and recommendations
- Information sharing on the State of Play in rare diseases research
- Skill and expertise sharing to advance translational, pre-clinical, and clinical research
Ultimately, all this will help:
- Avoid duplication of effort through co-operative discussion
- Cost saving through knowledge and resource sharing
- Accelerate diagnoses and therapy development for rare diseases
- Advance the care and the cure of rare disease patients
- Maximise the impact of investment in rare diseases research
To apply to become a member, please submit a “Letter of Intent”, signed by your organization’s legal representative, together with a “Letter of Motivation” stating the reasons for wishing to join IRDiRC, addressed to scientificsupport [at] irdirc [dot] org
Template of Letter of Intent:
For umbrella patient advocacy organizations: LOI-Patient-Advocacy-Membership-2017