The EURORDIS survey programme Rare Barometer has launched an international survey on the journey to diagnosis for people living with a rare disease, with the support of Rare Diseases International (RDI). The survey is…
News
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On 22 November 2021, Europe, US and Canada were lit up in red to raise awareness about 22q11 syndrome! Many cities took part in this day to raise awareness about…
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Unfortunately, the news from COVID are bad. In Germany the hospitals are saturated and a lock down is again being considered. In this context, we have reached with heavy hearts…
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4th European 22q11 Congress with extended programme 20-21.11.2021 In lectures and workshops on the most important topics related to DS 22q11, the most renowned experts from Germany, Europe and the…
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On 22 November, Europe will light up in red on 22q11 Day! November 22nd is the International 22q11 Day, a European movement to raise awareness about 22q11 microdeletion syndrome by…
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22q11.2 deletion syndrome (22q11DS) is a genetic condition associated with a markedly increased risk for psychosis. Psychotic experiences are classically evaluated by clinical interviews that give little information about these…
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My name is Aine, I am 33 years old and I live in Ireland. I was diagnosed with 22q11 at 21 years old. Growing up I had textbook symptoms, I…
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Every two years, 22q11 Europe organizes a conference in coordination with a local 22q11 association. The objective of this conference is to keep patients and relatives informed with recent researches,…
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Hello, My name is Audrey and my husband is Sebastien. We are the parents of a 5 year old little boy, named Jonas. We learned that he was a carrier…
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Hello, my name is Gwenaelle, I’m 29 years old and I’ve been lucky enough to have two children (and the best choice): a 7 year old boy, Enzo, and a…