Xtraordinaire is a French based non-profit organization, founded by parents in 2006, for families and patients with rare X-linked Intellectual Disability Syndromes, a community dedicated to improve lives of the patients and their families, and to encourage research programs. 

Key syndromes represented : 

Partington / ARX, Coffin-Lowry, DDX3X, Creatine Transporter Deficiency / SLC6A8, duplication gene MECP2, Allan-Herndon-Dudley / MCT8, Renpenning / PQPB1

Key missions :

• Help, Support, Inform families about their rights, access to education, caregiving and therapeutic solutions
• Work to build awareness, Educate the global community
• Promote, Encourage and Fund research programs
• Create a strong network to Strengthen partnership between researchers, physicians and patients
• Represent and Fight for patients and families interests
• Advocate to Increase and Shorten the path to diagnosis