I am rare. Actually unique. Rare Disease Day


“When I found out I was stunned. It was clear that it was #rare but I didn’t think so rare. After a while I began to realize that you are rare, but there are also many rare diseases. The cool thing is that at a certain point you start to feel you #sexy, in the American sense of the term. Doctors look at you curiously, the specialists can’t wait to explore under your eye. You laugh, a smile for every time you cried. I have a big karmic debt in smiles. At the moment I have cried more than I smiled. I think I will smile today today, tomorrow, the day after tomorrow. I hope I will not stop. #ifeelsexy ”

This is what Roberta wrote. You have a rare disease. What gift can we give her? Share, talk about it, be less afraid.

Questo lo scrive Roberta. Lei ha una patologia rara. Che regalo possiamo farle? Condividere, parlarne, avere meno paura.

Today is February 29th, the rarest day.
and we celebrate the Rare Disease Day

In Europe a disease or disorder is defined as rare when it affects less than 1 in 2000 citizens. Rare diseases are characterised by a wide diversity of symptoms and signs that vary not only from disease to disease but also from patient to patient suffering from the same disease

Usher syndrome: 1 out of 100000
Retinitis Pigmentosa: 1 out of 4000
Stargardt syndrome: 1 out of 10000
Ignorance: 1 out of…

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.