Progressive hemifacial atrophy

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Synonyms: Hemifacial atrophy | PHA | Parry-Romberg syndrome | Progressive facial hemiatrophy | Romberg syndrome

Progressive hemifacial atrophy (PHA) is a rare acquired disorder characterized by unilateral slowly progressive atrophy of the skin and soft tissues of half of the face leading to a sunken appearance. Muscles cartilage and the underlying bony structures may also be involved.

Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version June 2024

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Progressive hemifacial atrophy?

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Advocacy Organizations

Aicardi-Goutieres Syndrome Advocacy Association

AGSAA is a global coalition of deeply dedicated parent advocates working alongside clinicians, researchers, and scientists. We are united in our desire to improve the lives of individuals and families living with Aicardi-Goutières Syndrome and those yet to be diagnosed. Everything we do reflects a sense of urgency to rescue patient potential and preserve quality of life through accelerating research and providing timely emotional and educational support alongside evolving clinical care recommendations to affected families.

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Clinical Trials

For a list of clinical trials in this disease area, please click here.