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Parry-Romberg Syndrome

Medline NLM definition: Facial Hemiatrophy is a syndrome characterized by slowly progressive unilateral atrophy of facial subcutaneous fat, muscle tissue, skin, cartilage, and bone. The condition typically progresses over a period of 2-10 years and then stabilizes. (Parry Romberg Syndrome is not a MeSH term, but it is associated with the MeSH term Facial Hemiatrophy)
 

Parry Romberg Syndrome: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke (US site)

Parry Romberg Syndrome: information from NORD, the National Organization for Rare Disorders (US site)


PubMed search on Facial Hemiatrophy

Support Groups

No specific support groups listed.

Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.

Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.

NHS Inform: brain, nerves and spinal cord 
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.

 

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