VIII international congress Cornelia de Lange syndrome
Raríssimas would like to invite all of you to participate on this important VIII International Cornelia de Lange Syndrome Congress.
As a mother, I would like to personally welcome you. A glad welcome filled with the desires, hopes and dreams that we all certainly share.
As many of you, I had CDLS son – Marco.
I was 20 and had been married for just over a year when I got pregnant. At the time, there were few means of diagnosis but I knew something was wrong.... But, when he was born, I looked at his little face and I did not see anything different. For me, it was the most beautiful baby in the world!
Later, when the doctor told me he had CDLS, my moments of anguish began. No one could answer my questions, so my fight was personal! I did not traced plans for the future because I did not know what to expect. So I decided I had to enjoy every minute I had with my son…
Today, thankfully we have new drugs, new means of diagnosis and new perspectives about this rare disease. So we invite you all to discuss how to achieve our children’s potential, regardless their disease. Side by side, medical, scientists and parents will fight in order to bring a brighter future to all the marcos of all over the world.
We are waiting for you
Prepare yourself to be challenged, excited and inspired!
See you all soon!
