Indian Organization for Rare Diseases (IORD) is a full member of Rare Disease International (RDI)
Geneva: In a notable achievement for the global rare disease fraternity, Rare Diseases International (RDI) has been granted “official relations” status by the World Health Organization (WHO) during the 155th session of the WHO Executive Board in Geneva, held on June 3-4, 2024.
The WHO’s “Official relations” designation is a privilege that the Executive Board may confer upon select non-governmental or philanthropic organizations for their sustained and systematic engagement in the interests of the Organization.
Referred to as non-state actors in official relations, such organizations may be invited to participate in sessions of WHO’s governing bodies. This privilege also encompasses the opportunity to make statements, subject to invitation by the Chairman or upon request, especially when discussions align with the entity’s areas of interest, as stated by WHO.
This status empowers RDI to share expertise, insights, and perspectives from the rare disease community with WHO, focusing on initiatives to enhance awareness, identify needs, and map technical resources related to rare diseases over a three-year period.
Moreover, this collaboration will enable RDI to work more closely with WHO in strengthening advocacy efforts, raising awareness, and providing technical support for People Living with a Rare Disease (PLWRD), ensuring their equitable access to essential health services within the framework of universal health coverage.
By attaining official relations status, RDI aims to enhance its partnership with WHO, supporting Member States and the rare disease community in enhancing policies and initiatives for PLWRDs. This includes efforts to expand healthcare access, bolster international response mechanisms, and foster a more inclusive health environment, as highlighted by RDI in this article.
