AIBWS è iscritta al Registro Unico Nazione del Terzo Settore (RUNTS)
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Rare Disease Day
Febbraio 28, 2017
Rare Disease Day takes place on the last day of February each year. L’obiettivo principale della giornata delle Malattie Rare è quello di sensibilizzare l’opinione pubblica tra il generale pubblico e i responsabili delle decisioni sulle malattie rare e il loro impatto sulla vita dei pazienti.The campaign targets primarily the general public
and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
Rare Disease Day events are down to hundreds of patient organisations all over the world who work on a local and national level to raise awareness for the rare disease community in their countries.
Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. We especially thank our official Rare Disease Day partners, the National Alliances. These are umbrella organisations who group together several rare disease organisations in a given country or region. Click on a logo of one of the National Alliances to go to their website.
The campaign started as a European event and has progressively become a world phenomenon, with the USA joining in 2009 and participation in over 80 countries throughout the world in 2016. Hundreds of cities continue to take part in Rare Disease Day and we hope even more will join in 2017.
Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.
On rarediseaseday.org you can find information about the thousands of events happening around the world on the last day of February to build awareness for people living with a rare disease and their families.
If you are planning an event, register your event details on our Post your Event page to get your event listed on the site. Find out 7 ways to get involved right now!