Newsletter
February 2022

Welcome to our February Newsletter for all the latest news and events from the Neuromuscular community.

Articles in the edition...

The EURORDIS 2022 Black Peal Awards
TREAT-NMD's new FSHD Taskforce
TREAT-NMD Welcomes new Research and Communications Manager

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The EURORDIS 2022 Black Peal Awards

We are delighted to say that The European Alliance for Newborn Screening in Spinal Muscular Atrophy won the “EURORDIS Company Award for Patient Engagement” Award at the 11th edition of the EURORDIS Black Pearl Awards...

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7th International TREAT-NMD Conference Postponed!

We are disappointed to announce that the 7th International TREAT-NMD Conference scheduled for 15-17 June in Vancouver has been postponed...

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New TREAT-NMD FSHD Taskforce

In 2021, TREAT-NMD established an FSHD Taskforce bringing together a range of clinicians and patient advocacy representatives with a mutual interest in helping the field move forward...

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TREAT-NMD Welcomes new Research and Communications Manager

We’d like to welcome Neil Bennett, who joined TREAT-NMD as our Research and Communications Manager in January...

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Duchenne Muscular Dystrophy Expanded Core Dataset Project Update

The Duchenne Muscular Dystrophy (DMD) and Limb Girdle Muscular Dystrophy (LGMD) dataset project teams continue to engage with registries to progress the adoption of v1.2 of the DMD dataset and the v1 LGMD dataset...

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Call for Participation in Myotubular and Centronuclear Myopathy Research

If you are a healthcare professional caring for patients with myotubular or centronuclear myopathy anywhere in the world, you are invited to support translational research in these conditions by participating in the Myotubular and Centronuclear Myopathy (MTM & CNM) Patient Registry...

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CMT 4 Me Podcast

CMT 4 Me is a podcast from the Charcot-Marie-Tooth Association (CMTA)...

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EURO-NMD Educational Webinars

EURO-NMD provide educational webinars on a monthly basis to increase the knowledge around different specialist areas related to the neuromuscular field...

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The 2022 Call for Grant Applications by Duchenne Parent Project Netherlands is Now Open!

The 2022 call for grant applications by Duchenne Parent Project Netherlands is now open! The submission deadline is 1 April 2022...

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Upcoming Events

Below is a list of upcoming NMD/rare disease events. If you would like to advertise your event in the TREAT-NMD newsletter please complete the online form, or contact TREAT-NMD directly...

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LGMD Australasia Expert Masterclass 11th &12th May 2022 (online)

The TREAT-NMD Education Team are pleased to announce that applications for our next LGMD Expert Masterclass in Australasia are now open...

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Register Now! Final Places Remaining for TREAT-NMD Early Diagnosis Seminar

The first TREAT-NMD Early Diagnosis Seminar takes place on the 10th March. This new addition to TREAT-NMD's education events will explore how to identify the signs of Duchenne Muscular Dystrophy...

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Living Rare, Living Stronger NORD Patient and Family Forum

The National Organisation for Rare Disorders (NORD) is hoping that they can host their Living Rare, Living Stronger NORD Patient and Family Forum in person this year...

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Muscle Matters 2022 Seminar on Congenital Muscular Dystrophy

Muscular Dystrophy UK will host a Muscles Matter Seminar on Congenital Muscular Dystrophy on Tuesday the 29th of March...

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Myology and mitoNice Abstract Deadline Approaching

AFM-Telethon will be holding their 7th International Myology Congress in person this year. The congress will be held at the Nice Acropolis Congress Centre on the 12th to the 15th of September 2022...

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Save The Date for Parent Project Muscular Dystrophy Educational Events 2022

Parent Project Muscular Dystrophy (PPMD) has an exciting calendar of events for 2022...

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Save the Date for Duchenne Parent Project Spain Annual Congress

Since 2016 Duchenne Parent Project Spain has organized an annual Congress, which in recent years has been suspended due to the pandemic. But next May 13, 2022 they will be with all of you again, to analyse mainly the different therapeutic strategies, the challenges and key priorities to improve the quality of life in children, adolescents and adults with Duchenne Muscular Dystrophy and Becker...

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Newsletter February 2022