Since IPOPI became a member organisation of Rare Diseases International (RDI) earlier this year, Johan Prevot IPOPI’s Executive Director has now joined the Pre-Formation Group, responsible for steering RDI forward until an elected Board of Directors is functional.
The Pre-Formation group is made of EURORDIS and National Alliances of the US (NORD), Canada (CORD), IPOPI, Japan (JPA), China (CORD), India (I-ORD), the pan regional network for IberoAmerica (ALIBER) and DEBRA International
Rare Diseases International’s objectives are:
- To promote Rare Diseases as an International Public Health priority through public awareness and policy
- To represent its members and people living with rare diseases internationally
- To enhance capacities of RDI members
IPOPI recognizes the importance of fostering patient-centered rare diseases policies in all world regions to improve access to diagnosis and care for all people living with RD including primary immunodeficiencies.