Advocacy and raising awareness for persons living with rare diseases

Supporting a capacity building programme for the advocacy strategy of Rare Diseases International


Over 300 million persons live with a rare disease worldwide, representing between 3.5 and 5.9% of the global population. Many of these diseases are chronic, progressive, disabling, and often life-threatening. Persons with rare diseases additionally suffer from discrimination and stigma, as well as access to healthcare.


The organization, Rare Diseases International, regroups worldwide efforts to make rare diseases an international policy priority. Working as an alliance, RDI advocates, represents and supports all persons living with a rare disease and their families. They push for greater equity, including recognition of the many challenges that persons with a rare disease face.


The Fondation Philanthropia Europe supports RDI in its capacity building, specifically with the objective to develop its advocacy strategy within the UN system. These efforts paid off in December 2021, when the UN Resolution on "Addressing the challenges of PLWRD and their families" was formally adopted at the UN General Assembly. This milestone provides a new platform for RDI to provide greater visibility for persons living with rare diseases and effecting positive change for their quality of life.











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