A lack of robust qualitative data and information has a detrimental impact on Persons Living with a Rare Disease (PLWRD) and their families. The community’s experiences and challenges are often invisible and unrecognised.
RDI explores the feasibility of a Global State of the Art Resource to breach the data gap – a global information resource providing credible, updated and factual data valuable to multiple groups.
The Global State of the Art Resource initiative is at an exploratory phase. RDI is leading discussions across stakeholder groups.
Data empowers civil society advocacy and shapes national and international policy decisions and resource allocation.
The Global State of the Art Resource would promote the generation and sharing of knowledge about rare disease policy landscapes worldwide, raise awareness of the experiences and challenges of PLWRD, and encourage dialogue across stakeholders.
a Global Resource
A global information resource would be for all stakeholder groups and overseen by academic and patient organisations to ensure independence, credibility and value.
The proposed resource is modelled on the “Report of State of the Art Report” in Europe, which highlighted activities and progress at the European level as well as within each country,
The initiative would follow a stepwise approach, progressively piloting the model in different countries and regions.
A Global Resource for:
- Civil society groups – an information and data source to support advocacy
- National authorities and policymakers – a monitoring tool to shape national strategies
- Companies – a source of quality information to help inform decisions that impact the rare disease community