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Newsletter
January 2022
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Welcome to our January newsletter which features all the latest news and events from the neuromuscular community.
Articles in the edition...
- TREAT-NMD 7th International Conference Early Bird Tickets Extended!
- Rare Disease Day 2022
- Register Now for the TREAT-NMD Duchenne Muscular Dystrophy Early Diagnosis Seminar.
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TREAT-NMD 7th International Conference Early Bird Tickets Extended!
Want to attend the TREAT-NMD Conference in Vancouver Canada? You can get your ticket now and still enjoy the early bird discount! The early bird offer has now been extended until 28th February. Get your tickets now and secure your place at the 7th TREAT-NMD Conference. You can purchase tickets through the conference website...
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Duchenne Muscular Dystrophy Expanded Core Dataset Project Update
Following on from a successful year of growth and development in 2021 the Duchenne Muscular Dystrophy Expanded Core Dataset Project team are looking forward to 2022...
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Limb Girdle Muscular Dystrophy Core Dataset Project Update
Following on from the successful development and launch of the new Limb Girdle Muscular Dystrophy (LGMD) core dataset we are looking forward to 2022...
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Rare Disease Day 2022
Rare disease day is coming up on the 28th of February and is a chance to raise awareness and generate change for people living with rare diseases...
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Duchenne Data Platform First Patient -Led Registry to Achieve FAIR Status.
Duchenne Parent Project the Netherlands announced that their patient-led online registry (The Duchenne Data Platform) has successfully deployed an innovative and sustainable FAIR solution, achieving a FAIR status...
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What's going on with OPENTACT?
Opentact.net is an online resource, set up by Muscular Dystrophy and Anna Mayhew, for physiotherapists working either in the community or in a specialist centre with children or adults with Neuromuscular Disorders...
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Real World Evidence in EU Medicines Regulation: Enabling use and Establishing Value
Enabling the use of real-world evidence (RWE) and establishing its value for regulatory decision-making on the development, authorisation and supervision of medicines in Europe by 2025 is the vision of European regulators as outlined in an article published in Clinical Pharmacology & Therapeutics in November 2021...
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Contribute to the Development of Standards of Care for LGMD
On behalf of the TREAT-NMD Limb Girdle Muscular Dystrophy (LGMD) advisory group, two surveys have been developed with the goal of understanding current care practices around the globe to help shape eventual Standards of Care for those living with LGMD...
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NORDpod
NORDpod is a podcast from NORD – National Organisation for Rare Disease...
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The FSHD Society Launches On Demand Materials
The FSHD Society has launched on-demand CME-accredited masterclass on facioscapulohumeral muscular dystrophy. Any physician and allied health professional who sees adult and pediatric neuromuscular patients will benefit from taking this course...
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The Next Call for ENMC Workshops is Now Open!
The next call for the European Neuromuscular Centre workshops is now open! The submission deadline is 1 March 2022...
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Register Now for the TREAT-NMD Duchenne Muscular Dystrophy Early Diagnosis Seminar.
The first TREAT-NMD Early Diagnosis Seminar launches this year in early March (date tbc). A new addition to the education events at TREAT-NMD, this event will explore how to identify the signs of Duchenne muscular dystrophy...
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Pre-Register Now for the CureDuchenne 2022 Futures National Conference
The CureDuchenne 2022 FUTURES National Conference is due to take place on the 27th – 29th of May 2022. The conference is focused on bringing education, resources, and connection to the Duchenne community in a family-friendly environment. You can now pre-register for the event via their website...
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15th UK Neuromuscular Translational Research Conference 2022.
Attracting in excess of 300 basic scientists and clinical scientists involved in neuromuscular disease research, the 15th UK Neuromuscular Translational Research Conference is designed as a scientific meeting to promote and share cutting edge clinical and scientific advances in the neuromuscular field, and to encourage new research and collaborations...
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World Congress on Osteoporosis, Osteoarthritis and Musculoskeletal Disease
The 22nd Edition of the WCO-IOF-ESCEO Congress which was due to take place in Berlin, has now decided to move online...
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