National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Femoral facial syndrome

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What is the prognosis for individuals with femoral facial syndrome, especially regarding mobility? What is the life expectancy for this condition? Can the condition be passed on to one's children?

The following information may help to address your question:


What is the long-term outlook for people with femoral facial syndrome?

The severity and specific symptoms in people with femoral facial syndrome (FFS) appear to vary among reported cases.[1] Because of this, outlook and life expectancy are difficult to predict. While it has been reported that survival is normal,[2] several cases of death before or shortly after birth have been described. There is limited published information available about adults with FFS.[3]

Mobility in people with FFS varies depending on the severity of femoral hypoplasia. Femoral hypoplasia can vary from minimal shortening with minimal bowing to complete femoral agenesis (absence of the femur).[3]
Last updated: 5/16/2017

Is femoral facial syndrome inherited?

The vast majority of cases of femoral facial syndrome (FFS) have been sporadic (not inherited), in people with no family history of FFS. Occurrence in more than one family member has been reported in three cases.[4][3]
Last updated: 5/16/2017

We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please contact us.

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GARD Information Specialist

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  1. Y Gillerot, C Fourneau, T Willems, L Van Maldergem. Lethal femoral-facial syndrome: a case with unusual manifestations. Journal of Medical Genetics. 1997; 34:518-519. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1050981/pdf/jmedgene00248-0078.pdf. Accessed 1/21/2011.
  2. Castro S, Peraza E, Zapata M. Prenatal diagnosis of femoral-facial syndrome: case report. J Clin Ultrasound. January, 2014; 42(1):49-52. http://onlinelibrary.wiley.com/doi/10.1002/jcu.22034/abstract.
  3. Nowaczyk MJM, Huggins MJ, Fleming A, Mohide PT. Femoral-facial syndrome: Prenatal diagnosis and clinical features. Report of three cases. American Journal of Medical Genetics Part A. 2010; 152A:2029-2033.
  4. Hennekam RC. Femoral-facial syndrome. Orphanet. July 2009; http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=1988.