Around the world, the absence of robust data and information on rare diseases has detrimental consequences for Persons Living with a Rare Disease (PLWRD) and their families.
Without data, the experiences and challenges of this community of over 300 million persons are often invisible and unrecognised.
RDI is exploring the feasibility of a Global State of the Art Resource (GSoAR) to breach the data gap – a global information resource providing credible, updated and factual data for all stakeholder groups.
Data empowers civil society advocacy and shapes policy decisions and resource allocation at the national and international levels.
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 Resource pooling together data in collaboration between patient organisations, clinicians, national authorities, and academia.
Academic and patient organisations will oversee the GSoAR, to ensure its independence, credibility and value.
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