Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
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 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.
The political momentum resulting from Rare Disease Day also serves advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.
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 2015. Hundreds of cities continue to take part in Rare Disease Day and we hope even more will join in 2016. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.
No longer so with all our silent gadgets still doing the same 
old task of… measuring time. And with the modern tempo of our busy lives, you will still hear the well-worn expressions: “Time flies”… “I didn’t have the time…” “You should be on time…” “If we have time…”
Recently, a TV programme was speaking of a survey among a large sample of women. The findings were quite amazing. The report showed that in the group of women who had been part of the survey, every one of them, yes, every single one of them, would have liked to change something in their appearance. Given the opportunity – and the money – each woman would have wished her appearance to be different. They were not afflicted with serious birth defects, or ugly scars, or any disfiguring attribute, yet they would have liked to see themselves, and to be seen, in a different way.
Is it any wonder that it has been published that “The revenue of the U.S. cosmetic industry is estimated to amount to about 62.46 billion U.S. dollars in 2016” (Statista, The Statistics Portal)? I had to read this more than once to let the meaning of the words sink in my mind!
Sarcastic? Pessimistic? Not really, rather… realistic. Is it not true that every day brings its share of… yes, temptation?
But what is a temptation if not a test? A test of what I am, what I can do, what I can become.
ASH WEDNESDAY – Hearing the words we may think : Already? And we go on thinking silently… Lent is there… It means: sacrifices, depriving one self of this and that, a bit… morbid? Gloomy?
