February 28 marks the 15th edition of the World Rare Disease Day. There are 300 million people in the world suffering from a rare disease.
In Italy there are an estimated 2 million rare patients, of which 1 out of 5 is a child, like my brother Giulio. He’s nine years old and he has spine muscular atrophy.
Diseases affecting a small number of people are defined as rare. The cause of many diseases is sometimes not known.
Celebrating this day is important in order to raise awareness of the needs of the rare disease patients and their families. This Day is an opportunity to put the spotlight on the needs of patients and their caregivers who are often left alone to face difficulties. Among the events organized this year, it also returns “Let’s turn on the lights on rare diseases”. The monuments of different cities will be colored with the colors (pink, green, purple and blue) of the Day, involving more than 100 countries.
I believe that the needs of all those who are faced with a rare disease must not be remembered once a year but daily, even with small gestures such as leaving the dedicated parking spaces free, not parking on the sidewalk slides and working for the demolition of architectural barriers.
I hope that this day will make people understand how important scientific research is to have the possibility of finding remedies for all those diseases that have no cure.