Monitoring and Dissemination

Invisibility is a form of violence. It perpetuates inequity and discriminatory processes. What can not be seen can be easily ignored.

Robust data is at the heart of advocacy and actions for Persons Living with a Rare Disease and families worldwide. Generating and sharing information brings visibility to the global community, encourages dialogue and collaboration across relevant stakeholder groups and support research into rare diseases.

In most countries, there is a lack of disaggregated data and information on different aspects related to the rare disease landscape. Data on rare diseases and monitoring of health and social inequity helps identify PLWRD as a vulnerable group within the population and informs policy decisions, resource allocation as well as practices and actions.

RDI is exploring the feasibility of an information resource on the global rare disease landscape: