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From 12 to 17 September, EURO-NMD participated in the 7th International Myology Congress and MitoNice. Organised by the AFM Telethon, this event gathered many people, experts and non-experts on the theme of neuromuscular diseases. We were able to meet several people interested in our network and our many ongoing projects. We also met again members of our network such as Hanns Lochmüller or Michelangelo Mancuso.
We are looking forward to the next edition !
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Our new full member from Norway is currently building a new work group on multidisciplinary care and looking for members from across the network. You are a committed nurse, speech therapist, dietitian, social worker or physiotherapist ? You would like to contribute to the international standardization and validation of multidisciplinary treatment of care ? Of outcome measures and PROMs ? Develop international care guidelines ? The group will meet for the first time this winter. If you are interested please send a message to Marianne Nordstrøm : mal@frambu.no.
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Only a few places are still available, but it is not too late ! We are delighted to announce that the 2022 Neuromuscular Translational School is scheduled to take place in Leiden, Netherlands 21st-25th Novmber 2022! Building on the past three schools, which all received excellent feedback, our residential course will furnish attendees such as researchers and clinicians with a well-rounded knowledge of the translational pathway. The Neuromuscular Translational School which is a joint collaboration between TREAT-NMD and ourselves is becoming increasingly popular. Attendees will also benefit from the very latest knowledge available in the neuromuscular community as this course is delivered by notable key stakeholders in the field. To ensure a high-quality interactive learning experience class sizes are kept deliberately small. We have been successful of securing funding to assist with this year’s and as such we are able to offer a reduced fee for attendees. (Please note: This reduced fee is not available for any attendees from industry.)
We are proud to announce that : "The 4th NEUROMUSCULAR TRANSLATIONAL SCHOOL, Leiden, Netherlands, 21/11/2022 - 25/11/2022 has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME®) with 25 European CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he/she actually spent in the educational activity."
We look forward seeing some of you in lovely Leiden!
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On 22-24 September 2022, at the Centro Congressi Paolo VI took place the Brescia Workshop on Neuromuscular Diseases. This event endorsed by the ERN EURO-NMD was organised by Prof. Massimiliano Filosto under the patronage of several academic and clinical stakeholders. It was a very intense and productive event that covered several aspects…
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Following the ERN's motto: "knowledge travels, not the patient" we are pleased to announce that the European Commission is funding an Exchange Training Programme. Through this programme your travel costs will be financed, and you will receive a daily allowance of 200€ per working day for your accommodation, travel insurance and subsistence costs. This Exchange Programme foresees 5 training days in another facility of the network which can be extended up to six weeks. The target population for this programme are healthcare professionals from ERN Euro-NMD, and in specific cases, patient representatives. Here is how it works:
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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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OCTOBER 2022
Thursday, October 13th - 16:00-17:00 Paris time
"Quality of life in Neuromuscular Disease"
Pre-recorded webinar in May 2022, delivered by Robert Pangalila (Rijndam Rehabilitation Clinic and Erasmus University Medical Centre, the Netherlands) on October 13th 2022 at 16:00 Paris time. The speaker will be present at the end of the webinar to participate in the Q&A. Patients will also be present to share their stories. The topic is QUALITY OF LIFE for patients with Neuromuscular Diseases. It will include patient testimonials: - Jon Rey-Hastie (United Kingdom)
- Madelon Kroneman (the Netherlands)
- Laetitia Ouillade (France)
- Boryana Stoyanova (Bulgaria)
- Patrizia Garzena (Italy)
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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 11 October 2022, 3-4pm CEST
Krabbe disease – natural history and treatment option by Samuel Gröschel and Ingeborg Krägeloh-Mann
Ingeborg Krägeloh-Mann is a Professor Emeritus for child neurology at the University Hospital Tübingen, Germany. Samuel Gröschel is senior child neurologist at the department of neuropaediatrics and leads the working group on leukodystrophies at the University Hospital Tübingen, Germany.
Tuesday 18 October 2022, 3-4pm CEST
DBS in Dystonia – Targets, programming and therapeutic challenges by Philipp Capetian
The speaker is Senior Consultant, Head of the Neurological-ICU and Head of DBS outpatient clinic at the University Hospital Würzburg in Germany.
Tuesday 25 October 2022, 3-4pm CEST
VPS13A and XK bulk lipid transfer diseases (formerly the now obsolete Levine-Critchley syndrome) by Adrian Danek
Professor of Coginitive Neurology at the Ludwig-Maximilan University München, Germany, Adrian Danek's research is focused on cognitive neurology, functional neuroanatomy, dementia, neuroacanthocytosis.
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In this webinar, Anton Ussi (Operations & Finance Director at EATRIS), together with Agustin Arasanz Duque (Senior Innovation Manager at VHIR/EATRIS), will provide practical guidance for using two important tools for RD researchers, developed within EU-funded projects: ERICA and EJP RD. This webinar is part of the Educational Webinar Series from ERICA’s WP5 Translation and Innovation. It builds on the introductory webinar “Current research services available for the rare diseases community” that was organized in November 2021 (available on the ERICA website Educational Webinar 1 Current research services available for the rare diseases community
📆 October 24, 2022
⌚️ 14:00 - 15:00 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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The International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) are jointly organizing a two-day conference on clinical research networks (CRNs) for rare diseases, which will take place on December 1 and 2. The objective of this conference is to gather experts from different continents to increase mutual knowledge on CRNs structure, activities and identify pathways to stimulate collaboration and interoperability of these networks. It is not possible anymore to register for in-person participation. To register for online participation, please complete this registration form.
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The TREAT-NMD Alliance are organising our 7th international conference focusing on translational medicine in inherited neuromuscular diseases to be held from 7th-9th December 2022 in Vancouver in Canada.
The aim of this international conference will be to share progress and lessons learned in the area of translational medicine in inherited neuromuscular diseases and plan for the delivery of future therapies to patients.
The conference will attract over 300 delegates including academics, patients and carers, patient advocacy organisations and clinical specialists.
TREAT-NMD would like to thank our individual members who shared their thoughts and ideas on the organisation of the 2022 conference.
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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. Over the course of 3 days, Duchenne Patient Academy 2022 attendees will listen to speakers and attend panel discussions moderated by experts in their respective fields. As with last year, attendees have the opportunity to become involved in the dialogue and share their experiences.
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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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The International Organization for Standardization (ISO) has published Phenopackets, the first clear computational way to responsibly share individual patient traits, removing a major barrier to research on disease diagnosis, treatment, and mechanism discovery. The standard was initially developed by the Global Alliance for Genomics and Health (GA4GH) and championed at ISO under the Canadian…
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Duchenne Data Foundation have launched their Instagram account! Follow them to stay in touch and learn about their projects, training opportunities and collaborations.
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On October 17th, a new MOOC entitled “Introduction to translational research for Rare Diseases” will be available. On this five-week course from the European Joint Programme on Rare Diseases, you’ll explore the therapeutic development process from the unique perspective of rare diseases. You will follow the journey from discovery to approved…
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