Finnish upper limb-onset distal myopathy

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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 July 2024

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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.

Project CASK

VISION Project CASK believes in a world free of the life limitations and debilitating effects of CASK gene disorders. ​MISSION To accelerate breakthroughs in research to develop treatments and a cure for CASK gene disorders. ​VALUES Collaboration. Transparency. Urgency.

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Clinical Trials

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