Saturday, February 29th , 2020 will be the 13th International Rare Disease Day. On and around this day, hundreds of organizations from countries and regions all over the world will hold awareness-raising activities. Rare Disease Day always takes place on the last day of February each year. The first Rare Disease Day was celebrated in 2008 on February 29th, a “rare” date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a “rare” number of days. The campaign started as a European event and has progressively become a world phenomenon. The USA joined in 2009 and to date over 100 countries participate all over the world.
The reason of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and the impact on individuals and or course their family lives. In addition, the campaign targets policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. It is so important to build awareness of rare diseases because 1 in 20 people will live with a rare disease at some point in their life. There is no cure for the majority of rare diseases and many will go undiagnosed. Rare Disease Day improves knowledge to the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living and supporting individuals and families living with rare diseases.
Deaf-Blindness in all of its uniqueness would certainly fall under Rare Disease. Have you ever checked out this list from the National Organization for Rare Disorders (NORD)?
https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/ Don’t see a description that would describe your individual deaf-blindness?- then it is very rare.
You can Rise Up For Rare Disease Day by getting involved and having some fun! Here are some ideas and ways to get you started https://rarediseases.org/rare-disease-day/
The reason of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and the impact on individuals and or course their family lives. In addition, the campaign targets policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. It is so important to build awareness of rare diseases because 1 in 20 people will live with a rare disease at some point in their life. There is no cure for the majority of rare diseases and many will go undiagnosed. Rare Disease Day improves knowledge to the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living and supporting individuals and families living with rare diseases.
Deaf-Blindness in all of its uniqueness would certainly fall under Rare Disease. Have you ever checked out this list from the National Organization for Rare Disorders (NORD)?
https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/ Don’t see a description that would describe your individual deaf-blindness?- then it is very rare.
You can Rise Up For Rare Disease Day by getting involved and having some fun! Here are some ideas and ways to get you started https://rarediseases.org/rare-disease-day/
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