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ERN EURO-NMD is looking for its next 2 talents. We are looking for :
👉1 Project Manager (M/F)
👉1 Project Assistant (M/F)
If you are looking for a challenging job in the world of rare neuromuscular diseases, come and work with a great team in the heart of an amazing European capital city !
Do not hesitate to apply, or share this position with your network.
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Last month, a quality of life webinar for patients with neuromuscular diseases was held. It was very successful and we have received a lot of good feedback. This webinar is the result of a project led by the EURO-NMD Patient Advisory Board and patient representatives involved in the Education Board of the network.
Pre-recorded in May 2022, it includes a talk by Robert Pangalila (Rijndam Rehabilitation Clinic and Erasmus University Medical Centre, the Netherlands), followed by patient testimonies. Jon Rey-Hastie (United Kingdom), Madelon Kroneman (the Netherlands), Laetitia Ouillade (France), Boryana Stoyanova (Bulgaria) and Patrizia Garzena (Italy), share their experience and views on what quality of life means to them. We hope to quickly set up new patient-focused webinars!
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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 84 EURO-NMD healthcare providers. We will support 3 young clinicians/researchers of the network by granting 3 bursaries of 500,-€, for the participation (talk/poster) at a neuromuscular congress, such as EAN, PNS, ESHG, WMS, etc. You are under 40 years old and interested?
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NOVEMBER 2022
Thursday, November 24th - 16:00-17:00 Paris time
"External Ophtalmoplegia" Delivered by Carmen Paradas Lopez (Hospital Universitario Virgen del Rocio and Instituto de Biomedicina de Sevilla (HUVR-IBiS). This is a Basic Webinar Series.
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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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Tuesday 15 November 2022, 3-4pm CET
Telerehabilitation in RND: an update by Luigi Lavorgna
The speaker is neurologist at the University 'Luigi Vanvitelli' in Naples, Italy.
Tuesday 22 November 2022, 3-4pm CET
Use of Biomarkers to monitor the presymptomatic phase of Genetic FTD: research advances for clinical trial readiness by Dario Saracino and Harro Seelaar
Harro Seelaar is neurologist at the Erasmus Medical Centre and the Alzheimer Centre Erasmus MC. He sees patients with cognitive disorders and in particular patients with Frontotemporal Dementia (FTD), Alzheimer's disease and Primary Progressive Aphasia (PPA). His scientific research focuses especially on FTD and PPA.
Dario Saracino is neurologist at the Hôpital de la Pitié-Salpêtrière, Paris, France. He also works as a researcher in the team 'Clinical and Translational Neurosciences' at the Institute for Brain and Spine (ICM) in Paris. His scientific research focuses on frontal functions and pathology.
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The EPNS Scientific and Research Committee together with the Young EPNS (YEPNS) are hosting the EPNS Journal Club in the shape of interactive webinars discussing selected articles of key interest to Child Neurologists on the 4th Wednesday of every other month at 17:00h CET.
"Efficacy and Safety of Vamorolone vs Placebo and Prednisone Among Boys With Duchenne Muscular Dystrophy"
📆 November 23, 2022
⌚️ 17:00 CET
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THE TREATABOLOME DB by Solve-RD
In the last two years, the Treatabolome project, a Solve-RD initiative, promoted the collection of evidence about gene and variant-specific treatments for rare diseases. The information, gathered by experts and published in systematic literature reviews, is now stored and accessible in the Treatabolome DB. Currently, the database includes up to 180 treatments associated with more than 1000 distinct variants – mainly for neuromuscular disorders. Records are completed with clinical information by using standard vocabularies such as HPO, Orphanet, OMIM, Mesh and Chebi. The project is open to new data submissions and collaborations.
Friday 18 November 2022 : 14:00 CET
Speakers: Sergi Beltran, Alberto Corvo, Leslie Matalonga (all CNAG-CRG)
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All ePAG meeting is going to be an online meeting held from 14 to 17 November 2022. This year they have put together five short online sessions peppered throughout one week, from Monday to Thursday. Each day, they will have a session at 10.00-11.00 CET. On Thursday, there will be an additional session from 11.15- 12.30 CET. To know more check the meeting’s agenda.
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The 15th Congress of the European Paediatric Neurology Society (EPNS) will take place on 20-24 June 2023 in the Congress Center Prague. The main highlight of the congress is “From genome and connectome to cure”. They invite us to see how the latest trends in understanding pathophysiology of neurological diseases are being implemented in clinical practice.
The programme is out! The main theme of the congress is “From genome and connectome to cure”. Take a look https://epns-congress.com/programme/ Be the next winner! During the Congress three prizes will be awarded: Outstanding abstract, Best ePoster, Best Oral Presentation. The Awards will be presented during the congress. The three winners will receive a free registration for the 16th EPNS Congress in Munich, Germany. What you need to do for your chance to win? Submit your abstract by 31 December 2022. https://epns-congress.com/abstracts/
Registration: opens in January 2023, so be sure to save the date in your diaries!
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This year, the 6th edition of Duchenne Patient Academy will take place. The Academy provides online training for Duchenne and Becker muscular dystrophy (DMD/BMD) patient advocates. This year’s theme is ‘Changing Perspectives’ and it will take place on December 1 – 3 2022. Extended deadline: Applications will be open until November 20, 12:00 CET. Submit an E-Poster abstract for the 2022 edition of Duchenne Patient Academy. Selected authors will be invited to present their E-Poster during the event taking place on December 1.
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The European Joint Programme on Rare Diseases (EJP RD) is glad to announce that the last round for the Research Mobility Fellowships funding opportunity opened on October 3rd, 2022. The call aims to support PhD students, postdocs, and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence. More information here.
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"Dystonia management in Europe in the context of ERN-RND: current status and future challenges". Since the first Europe-wide evaluation of dystonia management in 2016, several efforts have been made to improve dystonia care. One of these was the development of the Dystonia Disease Group as part of the European Reference Network for Rare Neurological Diseases (ERN-RND), which has implemented several initiatives based on the 2016 recommendations.The authors present the current status of dystonia management in the ERN-RND. Authors: Liesanne M Centen, David Pinter, Martje E van Egmond, Holm Graessner, Norbert Kovacs, Anne Koy, Belen Perez-Dueñas, Carola Reinhard, Marina A J Tijssen, Sylvia Boesch.
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The EJP RD Joint Transnational Call, a funding opportunity for research projects, will be launched on December 12th. 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 patients Topic: Natural History Studies addressing unmet needs in Rare Diseases Don't miss the information webinar will be held on December 15th for potential applicants.
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EURORDIS has announced the opening of photo submissions for the Photo Award 2023. You can submit your photos until 22 January 2023. The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond. The EURORDIS Black Pearl Awards takes place in February, marking Rare Disease Day.
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