Synonyms: Juvenile DM
An early-onset form of dermatomyositis (DM) a systemic autoimmune inflammatory muscle disorder with vasculopathy characterized by proximal and symmetrical muscle weakness evocative skin lesions and systemic manifestations. Vasculopathy occurs in the skin muscle (mainly in the perifascicular area) and sometimes in the intestinal tissue.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http: //www.orphadata.org. Data version September 2023.
Newly diagnosed with
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Cure JM Foundation
Our mission; This site is dedicated to providing accessible, confidential, system of support and advocacy; education; and community outreach and partnerships. Our integrated, comprehensive approach respects the individuality and diversity of the fibromyalgia community. A site to help those with fibromyalgia and chronic pain. The site is here to help patients, families, care givers. We invite you to use the site as a tool in coping with fibromyalgia and chronic pain. There are many resources regarding Fibromyalgia, Chronic Pain and the other diagnosis that come along with Fibromyalgia. Our goal is to help members and bring more awareness to chronic pain.
Myositis Support and Understanding
To improve the lives of and empower those fighting myositis through education, support, awareness, advocacy, and access to research.
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.
Breathe Support Network
MISSION STATEMENT The Breathe Support Networks mission is to provide support and education for pulmonary fibrosis patients and their families, helping them to better #LIVEwithPF. This includes, but is not limited to: - education about pulmonary fibrosis - guiding patients and families on how to talk to their healthcare team - providing tips to live a healthier more productive life - providing information about other pulmonary fibrosis resources
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.
Association Aux Pas du Coeur
Our organization wants to raise awareness and recognize rare diseases in Côte d'Ivoire. Our mission is to: Raising awareness and campaigning 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 so that doctors are able to make a final diagnosis and ensure the continuous follow-up of patients. Create a patient registry to establish very precise statistics of rare diseases in Côte d'Ivoire. Create a close-knit patient community. Break the isolation and despair of sick people and their families. Open up to the world and actively contribute to international research aimed at treatments.
Moonshots for Unicorns
Curing single-gene disorders
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 assists individuals living with catastrophic injuries and illnesses to fundraise toward their medical expenses and related costs.
For a list of clinical trials in this disease area, please click here.