Rare Disease Day in Portugal
Portuguese patient organisations have celebrated Rare Disease Day since 2008, organising a range of events over the years. Photo exhibitions, informative conferences, and rare disease award ceremonies have helped to raise awareness. The First Lady of Portugal also showed her support in the 2009 campaign. A National Plan was approved in 2007 but has not yet been implemented -- something that is at the center of rare disease conferences to this day. In 2015, a photo exhibit entitled "We Are Rare" put the spotlight on the faces behind rare diseases, and a concert and conferences raised awareness throughout the country.
Portugal has two national alliances to represent rare disease patients. Federação das Doenças Raras de Portugal (FEDRA) and Aliança Portuguesa de Associações das Doenças Raras (APADR) were both created in 2008. They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder. Find their contact information at the bottom of this page.
Do you know of any events not listed here? Or would you like to get involved? Email us at [email protected].
If you would like to help in any way, please write to us at [email protected].