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:

  • Partington X-linked mental retardation syndrome - ARX
  • Alpha-Thalassemia X-Linked Intellectual Disability Syndrome
  • X-linked creatine deficiency- SLC6A8
  • Coffin-Lowry syndrome
  • MECP2 duplication syndrome
  • Allan-Herndon- Dudley syndrome - MCT8
  • Renpenning syndrome - PQBP1

 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:

  • Develop relationships and strengthen solidarity between parents,
  • Engage within strong partnerships with experts to support any initiatives or programs either on genetic research, clinical surveys, or any kind of matters which can improve the conditions of the Xtraordinaire patients
  • Communicate to raise awareness and inform both families and professionals about those disorders,
  • Represent patients in any place they need to participate,
  • Raise funds to support action plans patients can benefit from.

 Main activities are:

  • Organize events with families alone or to let them meet expert practitioners or other professionals who can assist them in one way or the other,
  • Support families who just received a diagnosis or who need to talk for any reason,
  • Link with families to sustain their participation in research programs,
  • Raise and provide funding for any initiatives and participate in programs to represent patients expectations and dedication,
  • Communicate through print, internet, social networking, with the outcome of raising international awareness,
  • Ultimately act in any ways to best represent the related families of any of those syndromes.