Rare Disease Day is an observance held on the last day of February to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives, as well as to improve access to treatment. February 29 2012 marks the fifth international Rare Disease Day and the second time the day falls on the originally intended date (since 2012 is a leap year). EURORDIS (The European Organization for Rare Diseases) says that treatment for many rare diseases is insufficient, and some people’s quality of life is greatly hindered by inequality, simply because people have never heard of their disease, or do not understand the disease and the patient’s needs. The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, more than 1000 events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. Even though the campaign started as a European event, it has progressively become a world event, with the US joining in 2009 and patient organisations in 56 other countries participating in 2011. The text was based on the Rare Disease Day's website. For more information: http://www.rarediseaseday.org/
That's great, thanks for sharing that D it's always good when countries get together to help save lives
CrazyReD, it is always a nice moment and a proof that human kind really cares. Like lovelylass posted, one world, one heart. That's why I made this thread: to share a bit of information, because I care and I wanna make a difference. Because not all of us can access some info or their lives are in another pathway. So the same way I appreciate the fact that others share info about things they know with me, I believe the vice-versa will be also appreciated. Besides, with such a sensitive issue... I just really wanted to share it
The World Health Organisation also focuses on what are termed 'neglected tropical diseases', diseases that typically affect developing countries and can have a debilitating effect on sufferers but are generally not known about. Not sure what the exact web address is but the world health org is www.who.int
Ok it is also the Rare Disease Day And I bet the it's a lot of people's birthday! Happy birthday to you grandpa