American College of Rheumatology
The American College of Rheumatology (ACR) is the professional organization of rheumatologists and associated health professionals who share a dedication to healing, preventing disability, and curing the more than 100 types of arthritis and related disabling and sometimes fatal disorders of the joints, muscles, and bones. Members include practicing physicians, research scientists, nurses, physical and occupational therapists, psychologists, and social workers.
Childhood Arthritis & Rheumatology Research Alliance
The purpose of the Childhood Arthritis & Rheumatology Research Alliance (CARRA) is to create a robust multicenter organization that can support clinical trials and clinical research in childhood arthritis and pediatric rheumatology. Both investigator-initiated and industry sponsored trials are performed by this network. Within the Juvenile Dermatomyositis Committee, clinical treatment plans of consensus treatment approaches have been developed, and the committee is leading a number of other research projects related to juvenile dermatomyositis.
Cure JM Foundation
Cure JM Foundation is a patient support group dedicated to finding a cure and better treatments for Juvenile Myositis and improving the lives of families affected by JM. They also raise funds for medical research to improve the diagnosis, treatment, management and understanding of these rare illnesses.
Environmental Autoimmunity Group, NIEHS
The Environmental Autoimmunity Group (EAG) conducts a broad program of clinical and basic investigation in the area of adult and pediatric autoimmune diseases. The EAG uses multidisciplinary approaches to understand the roles of genetic and environmental risk factors for these diseases. We are currently focusing investigations on the Systemic Rheumatic Diseases.
European Neuromuscular Centre (ENMC)
The ENMC is an international research support organization for neuromuscular disorders, and strives to facilitate communication amongst scientists and clinicians working in the area of neuromuscular disease. The main route whereby ENMC facilitates communication and collaboration is via the funding and organisation of workshops with regard to a range of neuromuscular diseases. The ENMC also established a clinical trials network.
International Myositis Society (iMyoS)
The International Myositis Society (iMyoS) is a new society to support the diagnosis and treatment of myositis by implementing interdisciplinary standards of care on a global scale. iMyoS supports the development and harmonization of diagnostic criteria and standards of care for myositis and help to implement those in all other international & national societies. iMyoS fosters the education of myositis specialists and promotes inter-disciplinary curricula and fellowship programs. Additional goals include increasing international awareness of myositis, and providing support for the local organizing committee of the international myositis meeting (Global Conference on Myositis, GCOM), which takes place every two years. The Society collaborates with all existing networks, societies, patient support groups and allied health professionals.
Juvenile Dermatomyositis Research Group
A group of UK Pediatric Rheumatologists at 10 children’s hospitals formed The Juvenile Dermatomyositis Research Group (JDRG) and began recruiting patients to the JDM Cohort Biomarker Study and Repository (formally known as the National (UK and Ireland) Registry and Repository).The study and repository collects and stores serial clinical data linked to biological specimens such as serum, DNA, skin and muscle tissue from biopsies.
MYONET Global Myositis Network
MyoNet is a global multicenter, interdisciplinary research project on inflammatory myopathies. MyoNet involves neurologists, rheumatologists, neuropathologists, pediatric rheumatologists, basic scientists and statisticians, with expertise in genetics, proteomics, epidemiology and clinics. MyoNet is running a global myositis registry, formerly known as EuroMyositis, created to obtain uniform, longitudinal data in order to achieve increased knowledge on disease course and prognosis of myositis. In addition, this registry could be used as a tool in the clinic to assess patients. Individual visits contain details on the disease activity, including extramuscular symptoms, laboratory parameters, muscle weakness, physical abilities, treatment, autoantibodies, biopsy results and damage caused by the disease. Each centre (hospital) only has access to their own data, with data sharing for collaborative research projects.
The Myositis Association
The mission of The Myositis Association (TMA) is to find a cure for inflammatory and other related myopathies, while serving those affected by these diseases. They also raise funds for medical research to improve the diagnosis, treatment, management and understanding of these rare illnesses.
The Myositis Support Group is a UK charity providing support to individuals and their families affected by dermatomyositis, polymyositis, inclusion body myositis and juvenile dermatomyositis. They also raise funds and promote medical research to improve the diagnosis, treatment, management and understanding of these rare illnesses.
National Institute of Arthritis and Musculoskeletal and Skin Diseases
The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases.
National Institutes of Health
The National Institutes of Health (NIH) is the steward of medical and behavioral research for the United States. Its mission is science in pursuit of fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to extend healthy life and reduce the burdens of illness and disability.
- Pediatric Dermatology Research Alliance (PeDRA)
PeDRA is a collaborative research network, providing a platform from which pediatric dermatologists organize collaborative studies, while also supporting individuals embarking on early-stage research. PeDRA has more than 600 members representing more than 180 institutions. To address the devastating burden of pediatric skin diseases, and overcome challenges facing clinician scientists in the field, PeDRA has created an infrastructure for efficient, collaborative research. PeDRA was formed in 2012 by leaders from the Society for Pediatric Dermatology (SPD) with the goal of accelerating research and advancing treatment for children and families living with dermatologic conditions and diseases.
Pediatric European Rheumatology Society
A European scientific society for healthcare professionals in the field of paediatric rheumatology which has annual scientific meetings and research subcommittees. The Juvenile Dermatomyositis Working Party has pursued a research agenda related to juvenile dermatomyositis, including engagement in the SHARE European consensus recommendations for management and treatment of juvenile dermatomyositis, as well as work on outcome measures.
Paediatric Rheumatology International Trials Organisation
The Paediatric Rheumatology International Trials Organisation (PRINTO) is an international network aimed to foster, facilitate and conduct high quality research in the field of paediatric rheumatology.
Rheumatologic Dermatology Society
A core group of dermatologists established RDS to give those associated with cutaneous rheumatologic diseases more effective and efficient resources to combat skin disorders related to lupus, dermatomyositis, systemic sclerosis, morphea, vasculitis or orphan or rare diseases. Goals include to educate and improve the care and treatment of patients with these disorders, as well as to promote awareness, interest and training in the field for dermatologists, clinicians and investigators.
U.S. Food and Drug Administration
The U.S. Food and Drug Administration (FDA) is responsible for protecting the public health by assuring the safety, efficacy, and security of human and veterinary drugs, biological products, medical devices, our nation's food supply, cosmetics, and products that emit radiation. The FDA is also responsible for advancing the public health by helping to speed innovations that make medicines and foods more effective, safer, and more affordable; and helping the public get the accurate, science-based information they need to use medicines and foods to improve their health.
Washington University Neuromuscular Disease Center
An excellent educational resource for physicians detailing the differential diagnoses of the myopathies with useful clinical and pathologic descriptions of many neuromuscular diseases.
World Muscle Society
A multidisciplinary scientific society dedicated to advancement and dissemination of knowledge in the neuromuscular field for the benefit of patients. Started in 1995, the society has grown to more than 600 international members, held international congresses and performed collaborative research studies and clinical trials.