Hello, this is my story with 22q11 syndrome. I was born on 18/08/1991. Around the age of 6, I had learning difficulties in math and comprehension problems, but I didn’t…
New publications
-
-
Most children (90%) with 22q deletion experience some degree of developmental disability with delayed speech and language development as the most consistent feature. In formal standardized testing, most school aged…
-
If you haven’t already done so! Here’s a reminder to take part in 22q11 Day as members, local associations or citizens. On November 22nd, we celebrate « 22q11 Day »…
-
Aria is a 3 year old girl from Faroe Islands. The start of Aria’s life was a difficult time for her. When Aria was born, the nurse heard and saw…
-
Ana was born as a seemingly healthy child, apart from umbilical hernia she had at the birth, but soon the first problems arose. Because of her failure to thrive we…
-
My story with Di George syndrome begins in 2009 following a consultation with a pediatrician for my 3 year old daughter.We consulted a pediatrician because my daughter, born in 2006,…
-
This conference has brought together European families, clinicians, scientists, and researchers to share knowledge and expertise about 22q11 syndrome and foster connections. More than 20 speakers was present to cover…
-
22q11 day Once again this year, a number of cities across Europe took action to raise awareness of 22q11 syndrome by lighting up their emblematic buildings in red: UK, Ireland,…
-
The 22q11 conference in Dublin is coming up on November 18th and 19th! This conference aims to bring together European families, clinicians, scientists, and researchers to share knowledge and expertise…
-
Out of over 60 nominated projects, the 22q11 MOOC has won first prize in the communication category of the 2023 Rare Diseases Award of the Italian Rare Diseases Federation. The…