GET INVOLVED AND FOLLOW THE PROGRESS OF GLOBAL COLLABORATIONS AND INTERNATIONAL MUTLI-STAKEHOLDER PARTNERSHIPS AROUND THE WORLD.
A global initiative to tackle rare diseases through research and enable all Persons living with a Rare Disease to receive an accurate diagnosis, care, and available therapy.
Civil society groups can be part of the IRDiRC Patient Advocacy Constituent Committee composed of patient advocacy organisations from around the world.
Individuals can also represent patient groups in multiple working groups and topic expert committees
For more information, contact RDI Scientific Policy Manager, Mary Wang
The NGO Committee for Rare Diseases aims to promote multi-stakeholder collaboration and actions for rare diseases within the United Nations system. It is established under the umbrella of the Conference of NGOs in Consultative Relationship with the United Nations (CoNGO)
The civil society constituent of UHC2030 the global movement to build stronger health systems for Universal Health Coverage. UHC2030 is initiated by the World Health Organization (WHO) and the World Bank.
Patient organizations, international organizations, and civil society organizations may apply to be members of UHC 2030's Civil Society Engagement Mechanism (CSEM).
A knowledge resource, with databases on diseases as well as directories of expert centres, specialists and patient groups.
A global network bringing together stakeholders together to accelerate diagnosis.
A network bringing together stakeholders together to accelerate diagnosis.
A scientific and professional society for all who produce, use or encounter health technology assessment.
An alliance formed to accelerate the potential of research and medicine to advance human health.
An alliance working to improve the lives of patients and promote patient-centred healthcare.
REGIONAL PATIENT ORGANISATIONS FOR PERSONS LIVING WITH A RARE DISEASE