New publications

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…

Download the following document in your language for all the information about the Conference : English French Swedish Spanish Serbian Polish Netherlands Italian German Danish Croatian We are pleased to…

Eurordis, the European alliance for people living with a rare disease in Europe, is conducting its new Rare Barometer survey on the opinion of people living with rare diseases on…

We are conducting a survey targeted at adults affected by 22q11. With this survey, we are aiming to better understand your needs and how we can offer support. If you…