Xtraordinaire is a patient’s association dedicated to intellectual deficiency rare diseases when the root cause is genetically related to the X-Chromosome.They are many diagnoses of intellectual deficiencies sharing this X-linked origin and so far the main ones for Xtraordinaire are:
When other organizations existed prior to Xtraordinaire for diseases of that kind, they are not represented by the association. This is the case for the Fragile X syndrome as well as the Rett syndrome.
Xtraordinaire was founded in 2006 by a small group of parents. There are now more than 200 members among which more than 120 have relatives among patients.
X Linked Inheritance: This specific shared cause of disability means family stories with boys being patients and sometimes their mother being carriers (Female carriers usually do notmanifest a phenotype or just a very mild one).
Xtraordinaire is represented in Switzerland.
Main aims are:
Main activities are: