ERN ReCONNET joins the World Myositis Day – Sept 21st

ERN ReCONNET is not just a Network, it is a community where its members support each other.
Having this in mind, for the first time ERN ReCONNET joins the World Myositis Day, scheduled on Sept. 21st. We celebrate this awareness day on social media as we did for other rCTDs in the past year, to show our support to this rare community and disseminate relevant resources developed by our Idiopathic Inflammatory Myopathies (IIM) Disease Group led by Prof. Ingrid Lundberg from the Karolinska Institute (Sweden), Prof. Alain Meyer from Hôpitaux Universitaires de Strasbourg (France) and the ePAGs Olga Drapalova from the Czech League against the Rheumatism – Revma Liga (Czech Republic) and Silke Schlüter from the “Deutsche Gesellschaft für Muskelkranke e.V. – DGM” (Germany).

The establishment of a World Myositis Day (WMD) was an idea of ePAG Silke Schlüter and is the result of a long-term effort by representatives of myositis communities worldwide. It is celebrated on September 21st and offers a unique opportunity to raise awareness of this rare disease among healthcare professionals, policy makers, and lay public. The goal is to spread information about myositis and help others to better understand sick patients and, in particular, to further support research in this area, aiming for early diagnosis as well as the development of new treatment procedures. Myositis – affecting both adults and children – is a progressive inflammatory disease of the muscles leading to weakness, muscle loss, fatigue, sometimes also skin, heart, and lung involvement can occur.

Some international myositis patient groups are organizing special activities on the occasion of WMD. You can find these events on the iMyoS webpage

As ERN ReCONNET we further celebrate this important Myositis Awareness Day by helding a webinar on  „MULTIDISCIPLINARY DIAGNOSIS AND MULTIDISCIPLINARY TEAMS TREATMENT IN IDIOPATHIC INFLAMMATORY MYOPATHIES (IIM)“ scheduled for Sept. 25th, 2024 – 16.00 CEST. Invited speakers will be Prof. Louise Diederichsen, ePAGs Olga Drápalová and Silke Schlüter, moderated by Prof. Ingrid Lundberg. The webinar is focused on the importance of early diagnosis and the reason behind it, what are the characteristics of a good diagnosis, the importance of the multidisciplinary teams regarding treatment and diagnosis, and the role of the patient organizations.
Registration is open and free of charge at this link.

Olga Drapalova, as an ERN ReCONNET ePAG advocate and chair of the Czech myositis patient group, helped to build a bridge between our Network and the local patient organization. Olga appreciates the effort done by the Network, in particular she is glad to actively  contribute to the transfer of information and knowledge from the Network to patients and vice versa that led to an  enrichment of the various activities of her patient organization. Olga specifies „On the occasion of World Myositis Day, the Network is not only helping us spread the information about this rare disease on social media, but also offering webinars focused on myositis“.

Silke Schlüter, as an ERN ReCONNET ePAG advocate and chair of the German myositis patient group, has created a relationship between our Network and the local patient organization through her involvement in our Network. Silke feels honored to be part of the ERN ReCONNET. For Silke it is a special concern to support people with myositis. She is pleased to contribute to the mutual transfer of knowledge through this created international connection in order to be able to offer up-to-date information and help. Silke states: “International connections such as those with our Network are indispensable and absolutely necessary!“

Prof. Ingrid Lundberg, MD, PhD, is Rheumatologist, and Professor in Rheumatology at Karolinska Institutet, Stockholm (Sweden). She is a co-founder of the international, multidisciplinary Myonet registry with more than 30 centers involved and more than 6000 patients enrolled. Interdisciplinary management in the clinic is important to improve health care for people living with the often complex myositis disease. Interdisciplinary collaboration is also important in research to learn more about disease mechanism and to develop new therapies. ERN ReCONNET is a concretization of this conviction and as Network we are honored to have Prof. Lundberg as our IIM Disease Coordinator.

Prof. Alain Meyer, MD, PhD, is a Rheumatologist and University Professor and Hospital Practitioner; he is the head of the Functional Explorations Unit for Muscle, Physiology Department and a physician at the National Referral Centre for Rare Autoimmune Diseases, University Hospital of Strasbourg (France). Moreover, Prof. Meyer is a Research Officer at the UR 3072, Centre de recherche en biomédecine de Strasbourg at the University of Strasbourg. He is convinced that collective multidisciplinary work, beyond boundaries and together with the patients, will improve the diagnosis and the care for myositis. At ERN ReCONNET, Prof. Meyer is applying such strategic approach as our IIM Disease Coordinator.

Here are special messages from our ePAGs, Olga and Silke, to all the myositis patients.

Dear myositis patients, you are not alone. There are more of us with this rare disease, many of us willing to share our stories and offer hope for better days. The mission of patient organizations, which play an important role in the provision of verified information and education, focuses on the quality of life of patients through various activities, on research funding and, last but not least, on raising awareness of myositis, thereby supporting early diagnosis and effective treatment of patients. Olga Drápalová

Dear myositis patients, we are here for you! Myositis is a rare disease. Diagnosis and treatment are often not easy. Together with our network of patients, therapists, doctors and scientists, we provide a wealth of information about myositis. Developing uniform diagnostic and treatment criteria and supporting research projects is very important to us. Additional, our German myositis group offers exchange between patients and helps against the fear associated with the diagnosis. The contact persons in our German myositis group will be delighted to help you with your concerns. Through numerous activities we would like to raise social awareness of this disease and its consequences. The World Myositis Day should bring up special awareness of myositis. Silke Schlüter

All the developed resources on IIM can be seen here, a dedicated IIM Playlist where all the webinars focused on this rCTDs can be found here. All the resources and webinar are freely available.