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The coming year will mark the end of the first five years of functioning of the European Reference Networks (ERNs). However, there are good reasons to think that the ERNs will continue to exist after this first five tears period. Euro-NMD together with the ERN RND (focused on rare neurological diseases) and EpiCARE (focused on rare epilepsies) has started to plan the work for the next 5 years exploring synergies across these ERNs.
The three ERNs have in common a neurological focus and are thus collaborating in small working groups on cross cutting themes, e.g. a joint training curriculum, next generation sequencing applied to diagnostic, gene therapy policies, registries, approaches to mitochondrial diseases, amongst others. The expected outcomes will be in the form of policy recommendations and will strength the inter ERN collaboration with the aim of improving patient care.
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The ERN-transversal Working Group on Pregnancy and Family Planning in rare and complex diseases is currently organising an ERN-wide survey. The purpose of this survey is to recognize the issues and good practices related to pregnancy and family planning in rare and complex diseases in ERN centers. The results of this survey will be elaborated and further discussed in a dedicated workshop in order to plan further actions to address unmet needs and to share good practices. The survey is available below.
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Euro-NMD successfully applied for the 2020 CEF (Connecting Europe Facility) Telecom eHealth Call, a flagship-funding programme of the Europe 2020 Strategy in the sectors of transport, energy and telecommunications. This new CEF grant, which has started in this beginning of month for an 18-month period, builds on the activities of the previous 2018.
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Euro-NMD is co-developing together with EATRIS (The European Infrastructure for translational medicine) a Massive Open Online Course (MOOC) on Translational Research, which is part of a series of five. MOOCs on transversal and multidisciplinary aspects of rare diseases research that will compose the online academic education course being developed by the European Joint Programme on Rare Diseases (EJP RD) and coordinated by the French Foundation for Rare Diseases.
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2 – 4 December 2021Stanford continuing medical education and training contribute for the enhancement of knowledge and understanding of healthcare providers including physicians, specialists, physical, occupational, and speech language pathologist and nurses, outside specialized centers, in the clinical decision-making and medical and rehabilitative management of individuals with SMA. For that purpose, it has organize a virtual 3-day brunch seminar series is provided to integrate new 2021 treatment advances into clinical decision-making; and use new SMA standards as a model for public health, primary and multi-disciplinary care of all children and adults with neuromuscular disease.
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30th November – 4th December 2021 The Duchenne Data Foundation, in collaboration with the World Duchenne Organization, is launching the 2021 edition of the Duchenne Patient Academy (DPA). In this intensive training session, patient advocates receive training and updates to build a strong base for current and future global advocacy. Applications are now open and will close on November 9th.
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UPCOMING 2021 WEBINARS
NOVEMBER 2021 Thursday Nov 18th – 16:00-17:00 Paris time “Muscle and Statins” delivered by Pr. Dr. Kristl Claeys (University Hospitals Leuven, Belgium) The webinar will cover the wide range of potential muscular complications caused by statins. Diagnosis and treatment will be discussed using case presentations and literature data.
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If you missed a webinar, don't panic! We record all our webinars and they are available on our website! |
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To ensure equity of care for patients with rare neuromuscular diseases across Europe, the ERN EURO-NMD is strongly committed to boost continuous Training and Education Programmes. Our bursary scheme is open to young researchers/clinicians under the age of 40 years old that belong to one of the EURO-NMD healthcare providers. We will support 2 young clinicians/researchers of the network by granting 2 bursaries of 500,-€, for either a small research project, or the participation (talk/poster) at a neuromuscular congress, such as EAN, PNS, ESHG, WMS, etc. Interested? Just send us your CV and a letter of intention, either describing your research project, or explaining why participating in a certain congress is beneficial to you and your career.
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The FSHD Society offers investigator-initiated research grants to support basic, translational and clinical-based research in facioscapulohumeral muscular dystrophy (FSHD). The application process begins with the submission of a brief Letter of Intent (LOI) describing the aims and objectives of the proposal. LOIs are reviewed on an ongoing basis. Once approved, investigators will be invited to submit a full proposal for consideration and review by the FSHD Society’s Scientific Advisory Board (SAB).
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