Multidisciplinary diagnosis and team treatment in Idiopathic Inflammatory Myopathies скачать в хорошем качестве

Multidisciplinary diagnosis and team treatment in Idiopathic Inflammatory Myopathies

This ERN ReCONNET webinar focuses on the importance of early diagnosis and the reason behind it. It addresses the importance of the multidisciplinary teams regarding treatment and diagnosis, as well as the role of the patient organisations. Target audience of this webinar are both healthcare professionals and patients, caregivers and family members living with Idiopathic Inflammatory Myopathies. Speakers of this webinar are: 1) Louise Pyndt Diederichsen (Rheumatologist, Copenhagen University Hospital, Rigshospitalet) 2) Olga Drapalova (ePAG Advocate, ERN ReCONNET) 3) Silke Schlüter (ePAG Advocate, ERN ReCONNET). Louise Pyndt Diederichsen (Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark). Louise Diederichsen has a background as Consultant Rheumatologist at Department of Rheumatology, Copenhagen University Hospital, Rigshospitalet, Denmark, where she has established a Rheumatology-led Center for Idiopathic Inflammatory Myopathies. As a developing research field in Denmark, she established the Danish myositis Registry and biobank MYODAN in 2013, which has formed the groundwork for our future research within the spectrum of myositis diseases. Additionally, she has been a board member of The Euromyositis Registry since 2011, a consortium that collects standardized clinical data in over 30 countries, currently numbers more than 6000 patients. Olga Drapalova is currently retired. Regarding her professional career, she is a former teacher, who taught many years History and Russian in lower secondary schools. After gaining more educational experience, she worked as a regional inspector for many years. Before her retirement, she worked as an inspector for the secondary level of European schools. Moreover, she cooperated with the EUROCLIO, European association of history teachers and historians, and visited its annual conferences. Her autoimmune disease - polymyositis was diagnosed in 2014 after six months of serious health problems related to muscle weakness and a treatment at the regional level. Since then she has been a patient of the Rheumatology Institute in Prague. This rare disease has affected her muscles and lungs and includes anti-synthetase syndrome (Anti Jo-1) and interstitial lung disease. Thanks to the high level of medical care she is still able to be an active person. Since 2020, Olga has chaired the Czech Myositis Working Group and has gained experience from foreign colleagues. She prepared an informative leaflet for patients and, in collaboration with rheumatologists, prepared an informative material, Living with Myositis. She is currently launching another project Exercising with Myositis. She joined the ePAG ReCONNET in 2023. Silke Schlüter worked until the birth of her daughter full-time as a state-certified educator (partly in a Kindergarten). In 2004, physical symptoms had increased so much that a return to work after the maternity leave was not possible. The diagnosis of polymyositis was made in 2012. This was replaced by the diagnosis of overlap-myositis three years later. In 2014, Silke joined the Deutsche Gesellschaft für Muskelkranke e.V. - DGM (German society for neuromuscular diseases). Since 2016, she has been the chair of the German myositis-group, which belongs to the DGM. Four years later she also became a member of the DGM-board. As a member of the MYOSITIS NETZ she is involved in the development of the SOPs (Standard Operating Procedure) etc. The German myositis podcasts and the German explanation video about myositis were initiated and managed by Silke – partly as medical adviser. She is co-author of German guidelines in myositis, co-author of the editorial about the new International Myositis Society – iMyoS and co-author of the editorial “Working towards a patient-centred Global Myositis Alliance: call for partnership. Silke was one of the founding members of the International Myositis Society, which was founded in September 2019. Since then, she has been a member of the iMyoS-board. She is also a board member of the MYOSITIS NETZ e.V., which was newly founded in 2021. As a patient representative, Silke joined the IMACS (International Myositis Assessment and Clinical Studies Group) Rehabilitation & Exercise SIG in 2020. Silke participated in the Global Conference on Myositis – GCOM 2017, 2019 and 2022 and was responsible for planning and implementing the 2022 patient program with other international myositis patient representatives. She joined the ERN-EURO NMD and ePAG ERN-ReCONNET in 2023. More info about IIMs can be found here: https://reconnet.ern-net.eu/disease-i... You can register to the ERN ReCONNET Newsletter at the following link: reconnet.ern-net.eu/event-and-media-newsletter/