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…
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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,…
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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…
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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,…
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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…
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Children living with 22q11DS often have a range of health problems which can make life more challenging for themselves, as well as their parents and/or other family members. Studies have…
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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…
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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…
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Hello, I’m Leonie, I’m almost ten years old and I live in Colligny, a small village in France. I was diagnosed with 22q11 syndrome at the age of 26 months…
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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…