MAR 20, 2105
Argentina – International Rare Diseases Day
On February 28, in Buenos Aires, Argentina, a ceremony was held to celebrate the International Rare Diseases Day. The Argentinean Federation of Rare Diseases (FADEPOF) organised the event that consisted in the lowering of the national flag in San Martin square, carried out by Leonel, a 5-year-old patient with Noonan syndrome.
The Argentinean Association for Patients with Primary Immunodeficiency (AAPIDP), a founding member of FADEPOF, was present at the ceremony, advocating for awareness on rare diseases in the Latin American region.
In addition to the flag ceremony, the Argentinian patients’ community celebrated the launch of the National Registry of Rare Diseases (RENEPOF). This is the first official registry of patients with rare diseases in Argentina and its creation will foster a better understanding of epidemiology of rare diseases in our country. AAPIDP is thankful to FADEPOF for their continuous efforts for rare diseases’ patients.