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Newsletter
November 2021
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Welcome to our November newsletter which features all the latest news and events from the neuromuscular community.
Articles in the edition...
- TREAT-NMD 7th International Conference Update
- TREAT-NMD Masterclass Success
- Upcoming Events
- LGMD Core Dataset: Version 1
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Masterclass Success
The TREAT-NMD Education Team successfully delivered another LGMD Expert Masterclass to a Latin American audience this month...
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7th Annual TREAT-NMD International Conference
We are excited to announce the confirmed speakers we have lined-up for the 7th Annual TREAT-NMD International Conference taking place in Vancouver, Canada on 16th & 17th June 2022...
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LGMD Core Dataset: Version 1
We are pleased to announce that V1 of the Limb Girdle Muscular Dystrophy Dataset was approved by the PI & Chairs of TGDOC and published on the TREAT-NMD website to coincide with the release of the new Global Registries platform Limb Girdle Muscular Dystrophy on the 22nd November 2021...
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Research Call: Outcome Measure Library/Compendium
Are you a physiotherapist working in the neuromuscular field? Do you have an interest in outcome measures? Want to work on an exciting global outcome measures project? A team of world leading expert physiotherapists in our network are embarking on a new project...
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MYO MRI Conference Success!
Early November saw the eagerly anticipated MYO-MRI Imaging in Neuromuscular Disease Conference take place online. With an agenda featuring hot topic talks on AI in muscle imaging: acquisition, reconstruction, segmentation and classification and Future directions of MR imaging as an outcome measure: beyond FF and water T2 the event promised to be an exciting platform for debate, and it did not disappoint...
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New TREAT-NMD Core Dataset for FSHD
The TREAT-NMD Core Dataset for FSHD was recently updated to include some additional data items. If your registry collects data on FSHD patients please review the updated dataset and try to collect as many of the data items as possible...
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WMS 2021 Virtual Congress Available On-Demand
The World Muscle Society (WMS) held its 26th Annual Congress virtually on 20-24 September 2021. The conference was a great success and received fantastic support from members, delegates, and sponsors...
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Watch the 2021 NORD Summit On-Demand
In October 2021, NORD welcomed over 1000 delegates from all over the world to their virtual summit. The NORD rare Summit is one of the largest multi-stakeholder events in rare disease which brings together participants spanning the rare community...
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Stanford University 3rd Annual Spinal Muscular Atrophy Continuing Medical Education Conference on Clinical Decision-Making in the Midst of an Unfolding Phenotype
Stanford Centre for Continuing Medical Education is hosting a virtual 3 day seminar series on the 2nd of December to the 4th of December 2021. The aim of the series is to integrate new 2021 treatment advances into clinical decision-making; and to 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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Applications Now Open For Change 100
Leonard Cheshire are looking for students and recent graduates who have disabilities or long-term conditions to join their change 100 programme...
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Screen4Care Research Project
Patients of rare diseases often face a long journey to diagnosis and in turn a delay in access to proper treatments, care or enrolment into clinical trials. Screen4care is a new research project made up of an international consortium of 35 partners with the aim to significantly reduce the time for diagnosis for rare disease patients...
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Set of Measures to Evaluate Patient Engagement in the European Reference Networks
The Rare Disease and Orphan Drugs Journal has published a new study which is focussed on developing an evaluation framework which can be used to assess engagement of patients in the European Reference Networks (ERNs)...
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Parent Project Muscular Dystrophy Celebrates Screening More Than 36,000 Babies for Duchenne Muscular Dystrophy
Parent Project Muscular Dystrophy (PPMD) has now completed their Newborn Screening Pilot programme which was held in New York. The programme spanned 2 years and during that time more than 36,000 babies were screened for Duchenne Muscular Dystrophy...
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Charcot-Marie-Tooth (CMT) Awareness Month Update
October was Charcot-Marie-Tooth (CMT) Awareness Month. CMTUK organised several activities throughout the month in order to raise awareness of the condition...
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Newly Launched Medscape Activity Looks at Recent Data and Implications for Care for Spinal Muscular Atrophy (SMA)
Medscape recently launched “Spinal Muscular Atrophy: Recent Data and Implications for Care,” where Professors Tim Hagenacker, MD and Christoph Kleinschnitz, MD from the Clinic for Neurology, Essen University Hospital, Essen, Germany participate in an Expert Quickfire Countdown...
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Upcoming TREAT-NMD Events
The TREAT-NMD Education Team has been busy planning new and exciting events for 2022. Next year will bring new events to our repertoire at TREAT-NMD...
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Palliative Care in Neuromuscular Disorders Webinar
EURO-NMD (the European Reference Network for the thematic grouping of rare neuromuscular diseases), provide educational webinars on a monthly basis to increase the knowledge around different specialist areas related to the neuromuscular field...
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Myotonic Dystrophy Foundation - Ask-the-Expert panel on COVID-19 & Vaccines
Myotonic Dystrophy Foundation is inviting you to a virtual Ask-the-Expert panel on COVID-19 & Vaccines...
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