Synonyms: Adult dermatomyositis
A rare idiopathic inflammatory myopathy (IIM) characterized by evocative skin lesions muscle involvement with symmetrical proximal muscle weakness and specific histological features. The clinical subtypes are defined by the presence of myositis-specific antibodies (anti-Mi2 anti-NXP2 anti-TIF1-γ anti-MDA5 or anti-SAE antibodies) and are associated with specific clinical phenotypes and prognosis.
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 October 2024
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Dermatomyositis?
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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.
Born a Hero, Research Foundation
Our mission is to accelerate innovation and research to improve the quality of life for patients with FGFR Syndromes, including Pfeiffer Syndrome.
COMBINEDBrain Inc
COMBINEDBrain is a consortium for outcome measures and biomarkers for neurodevelopmental disorders. We are collaborating to cure rare, non-verbal brain disorders.
Help Hope Live
Help Hope Live supports community-based fundraising for people with unmet medical expenses and related costs due to cell and organ transplants or catastrophic injuries and illnesses. These efforts play a critical role in helping clients access the care and equipment they need to heal, live, and thrive. Unlock a powerful and safe way to raise funds for medical needs with Help Hope Live. They provide one-on-one fundraising guidance, a customizable Campaign Page, bill pay support, and additional benefits based on their 501(c)(3) nonprofit status.
Moonshots for Unicorns
Curing single-gene disorders
Myositis Support and Understanding
To improve the lives of and empower those fighting myositis through education, support, awareness, advocacy, and access to research.
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.
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.
The Myositis Association (TMA)
The mission of The Myositis Association (TMA) is to improve the lives of persons affected by myositis, fund innovative research, and increase myositis awareness and advocacy. Our programs and services provide information, support, advocacy, and research for the worldwide myositis community.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.