Synonyms: Distal myopathy type 3 | MPD3
Finnish upper limb-onset distal myopathy is a rare genetic distal myopathy characterized by slowly progressive distal to proximal limb muscle weakness and atrophy with characteristic early involvement of thenar and hypothenar muscles. Patients present with clumsiness of the hands and stumbling in the fourth to fifth decade of life and later develop steppage gait and contractures of the hands. Progressive fatty degeneration affects intrinsic muscles of the hands gluteus medium and both anterior and posterior compartment muscles of the distal lower extremities with later involvement of forearm muscles triceps infraspinatus and the proximal lower limb muscles. Asymmetry of muscle involvement is common.
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 April 2026
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Finnish upper limb-onset distal myopathy?
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Advocacy Organizations
Association Aux Pas du Coeur – Côte d’ivoire
Our organization wants to raise awareness and recognition of rare diseases in Ivory Coast. Our mission is to: Raise awareness and campaign to help with the diagnosis and free therapeutic care of patients. Request and/or contribute to actions relating to the training of the medical profession to be able to make a final diagnosis and ensure continuous monitoring of patients easily.
Fundacion Powerchair Football Argentina
To develop Powerchair Football in Argentina in order to integrate people with motor disabilities (SMA, Duchenne muscular dystrophy, Achondroplasia, Rare Diseases) into sports practice and to promote their social inclusion, based on empowerment, independence, and the creation of new bonds and friendships.
Neuromuscular Disease Foundation
The Neuromuscular Disease Foundation's (NDF) mission is to enhance the quality of the lives of people living with GNE Myopathy (also known as HIBM) through advocacy, education, outreach, and funding clinical research focused on treatments and a cure.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.