{"id":9583,"date":"2020-02-07T15:37:51","date_gmt":"2020-02-07T15:37:51","guid":{"rendered":"https:\/\/laforcedmd.com\/?p=9583"},"modified":"2022-05-03T18:05:46","modified_gmt":"2022-05-03T18:05:46","slug":"rare-disease-day-february-29-2020","status":"publish","type":"post","link":"https:\/\/laforcedmd.com\/en\/rare-disease-day-february-29-2020\/","title":{"rendered":"RARE DISEASE DAY – February 29, 2020"},"content":{"rendered":"

February 29, 2020, will be the thirteenth international Rare Disease Day coordinated by EURORDIS<\/a><\/span>. On and around this day hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities.\u00a0<\/strong><\/p>\n

What is the rare disease day?<\/h4>\n

The first Rare Disease Day was celebrated in 2008 on 29 February, a \u2018rare\u2019 date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, this month is known for having a \u2018rare\u2019 number of days. Rare Disease Day is the opportunity advocate for rare diseases as a human rights priority at local, national and international levels for a more inclusive society.<\/strong><\/p>\n

Rare Disease Day takes place on the last day of February each year. The primary objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients\u2019 lives.\u00a0<\/strong><\/p>\n

Building awareness of rare diseases is important because 1 in 20 people will live with a rare disease at some point in their life<\/strong>. There is no cure for the majority of rare diseases, and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision-makers to address the needs of those living with rare diseases.<\/p>\n

Because it manifests itself only rarely, Duchenne muscular dystrophy (DMD) falls within the rare diseases category.\u00a0 Learn about our history here<\/a><\/span>.<\/p>\n

Raising awareness of what it means to be rare. There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases we need more equitable access to diagnosis, treatment, care and social opportunity.<\/strong><\/p>\n

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Rare is many worldwide<\/span> \u2014 Rare is strong every day<\/span> \u2014 Rare is proud everywhere<\/span><\/strong><\/p>\n<\/blockquote>\n

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Statistics and facts<\/h4>\n