Your browser does not support javascript:   Search for gard hereSearch for news-and-events here.

Diseases

Genetic and Rare Diseases Information Center (GARD)

Progressive hemifacial atrophy


Other Names for this Disease
  • Parry-Romberg syndrome
  • Hemifacial atrophy, progressive
  • Romberg hemi-facial atrophy
  • Hemifacial atrophy
  • Progressive facial hemiatrophy
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Treatment

Newline Maker

How might progressive hemifacial atrophy  be treated? 

There is no cure and there are no treatments that can stop the progression of progressive hemifacial atrophy. Reconstructive or microvascular surgery may be needed to repair affected tissue. The timing of surgical treatment is generally agreed to be the best following exhaustion of the disease course and completion of facial growth. Most surgeons will recommend a waiting period of one or two years before proceeding with reconstruction. Muscle or bone grafts may also be helpful. Other treatment is symptomatic and supportive.[1]

Last updated: 10/2/2012

References
  1. NINDS Parry-Romberg Information Page. National Institute of Neurological Disorders and Stroke. January 2011; http://www.ninds.nih.gov/disorders/parry_romberg/parry_romberg.htm. Accessed 8/7/2012.


GARD Video Tutorial

  • Finding Treatment Information - A video developed by GARD Information Specialists that explains how you can find information about treatment for a rare disease.

    Finding Treatment Information

Clinical Trials & Research for this Disease

  • The Centers for Mendelian Genomics program is working to discover the causes of rare genetic disorders. For more information about applying to the research study, please visit their website.
  • ClinicalTrials.gov lists trials that are studying or have studied Progressive hemifacial atrophy. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
  • Orphanet lists European clinical trials, research studies, and patient registries enrolling people with this condition. 
Other Names for this Disease
  • Parry-Romberg syndrome
  • Hemifacial atrophy, progressive
  • Romberg hemi-facial atrophy
  • Hemifacial atrophy
  • Progressive facial hemiatrophy
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.