International Myotonic Dystrophy Awareness Day Declared for September 15, 2021

The NMD4C are proud to be a part of a global alliance of myotonic dystrophy-focused organisations who in honour of Rare Disease Day 2021 have united to announce the declaration of International Myotonic Dystrophy Awareness Day to be observed each September 15th.

 

Raising awareness of myotonic dystrophy (DM) is critical as it is a rare, multi-systemic, progressive, inherited disease that affects successive family generations but is often misdiagnosed and poorly supported. Myotonic dystrophy is the most common form of adult muscular dystrophy and considered the most variable of all known conditions, yet there is currently no cure and there are no approved treatments.

 

Read the Full Release Here!

International DM day announced

Read next...

SMA outcome measures training graphic

SMA Outcome Measures Training for Physiotherapists and Occupational Therapists

To support the development and training on validated NMD outcome measures we are pleased to provide opportunities for physiotherapists and occupational therapists to attend training sessions for outcome measures.

Congratulations to the 2024 early career award winners. Dr Mireille Khacho and Dr Jean-Philippe Leduc Gaudet.

Congratulations to the 2024 NMD4C Early Career Awards Recipients

We are excited to announce the recipients of the 2024 NMD4C Early Career Awards! This is the second year of our annual award program, celebrating excellence and contribution to the neuromuscular field from early career investigators across both clinical and basic science streams.

Pediatric Rare Disease Clinical Trials and Treatment Network - RareKids-CAN

MICYRN Secures $20 Million Grant from CIHR for a Pediatric Rare Disease Clinical Trials and Treatment Network

The NMD4C are excited to share that MICYRN’s success in securing a $20 million grant from CIHR Institute of Genetics to support the development and execution of RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network.

CNDR logo4x3

CNDR Welcomes Dr. Hugh McMillan as New Pediatric Lead

CNDR warmly welcome Dr. Hugh McMillan as the new CNDR Pediatric Lead and are grateful for the wealth of knowledge, expertise, and leadership he will bring to the role.  

NMD4C Hires two new Coordinators - Zainab and Victoria

NMD4C Welcomes Two New Staff Members

The NMD4C recently welcomed two new members to the network coordination team! Marine Christin, PhD joins us as the new Pre-Clinical Science Coordinator, and Maria Masnata, PhD joins as the Clinical Trials & Community Practice Manager. 

Journal of neuromuscular diseases

Journal of Neuromuscular Diseases Celebrates 10-Year Anniversary with Commemorative Editorial

The January 2024 edition of the Journal of Neuromuscular Diseases (JND) marked the journal’s 10-year anniversary!