Progressive hemifacial atrophy
Other Names for this Disease
- Hemifacial atrophy, progressive
- Parry-Romberg syndrome
- Romberg hemi-facial atrophy
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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.
Last updated: 10/2/2012
- 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.
- Finding Treatment Information - A video developed by GARD Information Specialists that explains how you can find information about treatment for a rare 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.