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1. Tell us a little bit about yourself Soon after my residency programme in Pisa (Italy) (2000) I had the privilege to work for three years at Dr. DiMauro’s Lab at Columbia University, NY, dealing with mitochondrial diseases and neurogenetics. Since then, mitochondrial diseases are still my passion. I returned to Italy in 2004; in Pisa I lead the outpatient neurogenetics service at the Neurological Institute of the University of Pisa, and I am the speaker of the Italian Network for mitochondrial diseases, founded in 2009. I’m also leading the Neurogenetics Panel of the European Academy of Neurology, and the Neurogenetics and Rare Neurological Diseases Group of the Italian Society of Neurology. [...]
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UPCOMING 2021 WEBINARS
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DECEMBER 2021 Thursday Dec 16th – 16:00-17:00 Paris time “Palliative care in Neuromuscular Disorders” delivered by Profs Tracey Willis and Derek Willis (Robert Jones and Agnes Hunt Orthopaedic Hospital NHS FT and Chester University and Palliative Care Centre...) "Neuromuscular disorders (NMDs) are characterized by progressive muscle weakness, leading to pronounced and incapacitating physical disabilities. Most NMDs are not amenable to curative treatment and would thus qualify for palliative care. “ de Visser M, Oliver DJ. Palliative care in neuromuscular diseases. Curr Opin Neurol. 2017 Dec;30(6):68
We feel our December webinar is essential to supply guidance and share best practices regarding this fundamental issue of patient care.
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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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We have scheduled our next ‘Summer’ School to take place in Leiden, Netherlands – 6-10 December 2021! We anticipate that our face to face school will be able to be held at this time, however are still mindful that travel for attendees and speakers might not be possible. In this case there is still a possiblity that this school may have to be held online. This event may be postoned or cancelled, depending on the Covid Situation in the Netherlands. We are also pleased to let you know that this School has been accredited but the European Accreditation Council of Continuing Education (EACCME) for a maximum of 26 European CME credits. The ‘Summer’ School which is a joint collaboration between TREAT-NMD and ourselves is becoming increasing popular year on year.
Applications for the 2021 Summer School closed on the 15th September 2021.
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Tuesday 7 December 2021, 3-4pm CET
Anne Koy is neuropeadiatrician and head of the Centre for Dystonic Movement Disorders in Children and Associate Professor at the University Hospital Cologne, Germany.
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2 – 4 December 2021 Stanford 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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LAST DAYS !
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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This work program covers the translational and innovative aspects of clinical research and hence will liaise with biotech and pharma to promote the potential of ERNs for the conduct of clinical trials in the rare disease field. [...]
The first educational webinar “Current Research Services Available to the Rare Disease Community” was held this month as part of ERICA’s Translation and Innovation WP5. The webinar is now available online on this link here ! We remind to our ERN community about the survey on research and educational needs that will be available on this link here and will close by the end of november.
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The European Joint Programme on Rare Diseases just pre-announced the Joint Transnational Call 2022, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases.
The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with expected impact to use the results in the future for benefit of patient.
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