Working Group for Myositis within the Swedish Rheumatism Association

ABSTRACT

The Swedish Rheumatism Association, our umbrella Organization In Sweden, there are approximately one million people with different rheumatic diseases, and about 1400 of them have a myositis diagnosis. In addition to several local associations, there are 3 nationwide diagnostic groups for systemic inflammatory diseases Working group for systemic lupus erythematosus (SLE), Working group for Systemic Sclerosis and Working group for Myositis. Goals and vision We form opinion and influence politicians and decision-makers at all levels in issues that are important to us, such as access to rapid care and opportunities for rehabilitation. Knowledge and Education We educate * Representatives who can share knowledge based on their own experience and to provide support and help for people living with rheumatic disease. * Volunteers for patient schools. * Patient Research Partners since 2008. Research and fundings * We are the single largest private funder of Swedish rheumatology research. * Patient Research Partners should become obvious members in research projects. Working group for Myositis was established in 2020 and most of our activities have been on-line. The number of members is growing as we spread out the information. We will continue with our on-line events and together with our experts arrange our first patient conference in 2022. We are a member of the Swedish Rare Disease Association and European Network ERN ReCONNET. We have now three Patient Research Partners with myositis and we will continue to participate in international research projects, such as IMACS, Rehabilitation & exercise SIG. Our mission is to give support to myositis patients and their families, share knowledge of their disease, facilitate meeting with others with the same diagnosis for an exchange of experiences or just for fun. Our goals are to * Inform through newsletters, patient meetings, website and webcasts. * Arrange lectures by myositis experts. * Arrange annual patient conference. * Raise awareness for the disease in society and inform healthcare professionals within primary care units. * Contribute to that all patients receives equally good care all over the country. * Inform about research results, ongoing studies and update information on new treatments and drugs. * Contribute to that all newly diagnosed patients have access to patient education and written information material about myositis. * Contribute for opportunities for rehabilitation, such as training in warm water pools and access to rehabilitation facilities in warm climate. * Collaborate with the Youth organization of the Swedish Rheumatism Association for Juvenile Dermatomyositis and provide support for parents, children and adolescents. * Collaborate with the myositis organizations in other countries. Our Webinars The experts who have shared their knowledge on our webinars are Ingrid Lundberg, Professor;Maryam Dastmalchi, MD, Rheumatologist;Helene Alexanderson, PhD, Associate professor, PT;Malin Regardt, PhD, OT;Balsam Hanna, Specialist Rheumatology;Dag Leonard, MD, Rheumatologist;Antonella Notarnicola, MD, Rheumatologist;Fabricio Espinosa, Rheumatologist, PhD candidate;Kristofer Andreasson, PT, PhD candidate;Jonatan Sjogren, OT;Lars Nordelv, CBT Therapist, also a patient;Helena Andersson, MD, Rheumatologist;Hanna Brauner, PhD, Dermatologist. Among the topics our webinars have covered so far are Diagnostic criteria of myositis, new research findings, existing treatments and ongoing studies, Physical activity and its effects on depression, safety of high-intensity interval training, Occupational therapy, Patient Reported Outcomes, Myositis Associated Antibodies and how to deal with anxiety, cardiac involvement and osteoporosis in myositis, clinical findings and treatments for Antisynthetase syndrome skin involvement in Dermatomyositis, Covid-19 and vaccination.