Canadian Rare Disease Network

Neuromuscular Mystery Case Rounds
2025-02-04 19:00 - 20:00 (America/New_York)
Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) are pleased to invite you to Neuromuscular Mystery Case Rounds. This case-based rounds webinar is for Canadian clinicians, academics, and trainees with an interest in neuromuscular disease. NMD4C and MDC are providing organizational and technical support. This is an independent clinical/academic webinar with no industry sponsorship or influence.

PxP 2025 Webinar Series. The patient perspective: Barriers and facilitators to patient partnership in research
2025-02-05 17:30 - 19:00 (America/New_York)
The webinar series is all about patient engagement in health research, also known as patient and public involvement (UK) or consumer involvement (Australia). It is worth mentioning that ‘patient engagement’ in health research is distinctly different from signing up to be a research participant. Taking part in a study as a participant (for example trying a new treatment or management program) can be a great way to help advance healthcare, but the role would not generally include giving input into the research study itself.

The 8th International TREAT-NMD Conference
2025-02-06 08:00 - 2025-02-08 17:00 UTC
The next TREAT-NMD international conference will take place in Dubai, United Arab Emirates from the 6th to 8th of February 2025. It will be a fantastic event welcoming delegates from all over the world including academics, patients and carers, patient advocacy organisations, clinical specialists and industry. Delegates will have the opportunity to:

Network with partners on key issues and challenges in neuromuscular disease
Engage with panels of international experts who will inform, stimulate and challenge debate
Acquire the latest updates on standards of care, outcome measures, patient reviews, and new developments

It is a fantastic opportunity for all stakeholders, including patients, academics, clinicians, registry curators and industry representatives, to get together to network, learn and exchange ideas about translational research.
Registration is not yet open however to be the first to find out updates on the programme, themes, speakers for the conference and to be notified when registration opens, register your interest here.

Diagnosis and Treatment of Nodopathies
2025-02-06 16:00 - 17:00 (Europe/Paris)

Multifocal motor neuropathy (MMN): diagnosis, treatment and update on biomarkers
2025-02-13 16:00 - 17:00 (Europe/Paris)

PKU CON 2025
2025-02-14 08:00 - 2025-02-15 17:00 (Europe/Helsinki) | milan, italy, Milan, Italy
PKU CON aims to bring together all stakeholders from around the globe currently involved in the management of patients affected by this inborn error of metabolism with an unique and same, single goal: optimize the care and assistance for patients affected by Phenylketonuria.
Many topics will be discussed during this first edition, starting from a renewed vision of the pathology, with possible identification of new biomarkers and metabolic control indices, to updates in the field of dietary and pharmacological interventions, and addressing relevant assistance-related issues such as burden of illness and unmet needs.

Electrodiagnostic Patterns in Immune-Mediated Neuropathies
2025-02-20 16:00 - 17:00 UTC

2025 Clinical Trials Training Summit
2025-02-24 08:00 - 2025-02-26 17:00 (America/Chicago)
