Rare Diseases International, a global voice for rare disease patients, was launched at the EURORDIS Membership Meeting. More than 60 patient representatives from 30 countries gathered for the launch and to adopt a joint declaration to advocate for rare diseases as an international public health priority.
The main objectives of RDI are:
- To promote rare diseases as an international public health and research priority by raising public awareness and influencing policy-making;
- To represent members and people living with a rare disease, in international institutions and forums, such as the World Health Organization (WHO) and the United Nations Economic and Social Council (ECOSOC);
- To enhance the capacities of members to improve the lives of those living with or affected by a rare disease through information exchange, networking, mutual support and joint actions.
RDI is a EURORDIS initiative, created in partnership with national alliances. In the coming years, RDI aims to structure dialogue with industry, streamline the organisation of international conferences, increase patient representation in research funding bodies and promote rare diseases within the UN system.
For more information about any of the above or to become involved in our advocacy work, please contact email@example.com