Canadian Rare Disease Network

CPD-Accredited Webinar | Exploring the clinical trial landscape in Duchenne muscular dystrophy: Challenges, opportunities and consideration of a possible cholesterol metabolism-related target
2025-01-14 18:00 - 19:00 (America/New_York)
NMD4C and MDC are pleased to invite you to a webinar on Exploring the clinical trial landscape in Duchenne muscular dystrophy: Challenges, opportunities and consideration of a possible cholesterol metabolism-related target. NMD4C and MDC are providing organizational and technical support. This is a an independent clinical/academic webinar with no industry sponsorship or influence.

Webinar-Genetic Carriers of PKU-Possible Health and Metabolic Implications?
2025-01-15 12:00 - 12:30 (America/New_York)

CIHI-Foundations of Patient Partnering Virtual Sessions
2025-01-15 13:00 - 16:00, 2025-01-23 16:00 - 19:00 (America/New_York)
Calling all patient and family partners! Are you interested in attending a training session to learn about foundational patient engagement concepts, participate in skill-building activities, and network with other patient and family partners? Consider signing up for a free 3-hour virtual training session developed in collaboration by CIHI and the Patient Advisors Network (PAN).

ACT Canada Webinar Series: Engaging patient partners in your CIHR grant application: Everything you ever wanted to know with Maureen Smith & Andrea Chow (Ontario)
2025-01-16 12:00 - 13:00 (America/New_York)
Learning Objectives:

Review the ways in which patients can contribute as partners on your CHIR grant application
Identify the challenges and barriers to patients in fulfilling grant application requirements and how researchers can support patient partners
Describe the considerations specific to grant application requirements for researchers working with patient partners from groups who are frequently under-served by health research

TREAT-NMD Myotonic Dystrophy Type 1 (DM1) Expert Masterclass
2025-01-16 12:00 - 18:00 UTC
Registrations are now open for our virtual DM1 Expert Masterclass on 16th January 2025, chaired by Nicholas Johnson and Benedikt Schoser. This event is designed for healthcare providers involved in diagnosing and managing DM1. Gain the latest insights on diagnostic pathways, standards of care, and emerging therapies, while engaging with experts, patients, and peers to enhance DM1 care.

2025 International Scientific Conference on Albinism
2025-01-21 08:00 - 2025-01-24 17:00 (Europe/Paris)
The Global Albinism Alliance (GAA) is very pleased to announce the 2025 International Scientific Conference on Albinism – ISCA 2025, that will be held virtually on January 21-24, 2025.
ISCA is THE meeting point worldwide for all scientists interested in sharing and improving knowledge of the biomedical aspects of albinism and, more generally, improving the health of those with albinism. It builds on the momentum created in 2012 with the launch of the EDA (European Days of Albinism) conference series that evolved into ISCA in 2022.

Webinar - Securing Funding for Clinical Trials
2025-01-23 12:00 - 13:00 (America/New_York)
Webinar objectives:

Identify various funding strategies for pediatric and perinatal clinical trials in Canada, including academic grants and industry partnerships.

Develop realistic expectations regarding the timeline and effort required to fund clinical trials through shared examples.

Understand different strategies when approaching industry and academic funders and identify key factors for successful proposals.

Challenges in the Diagnosis and Treatment of Inflammatory Neuropathies
2025-01-23 16:00 - 17:00 (Europe/Paris)
Delivered by Dr. Filip Eftimov (University Medical Center of Amsterdam, the Netherlands) & Jean-Philippe Plançon (EPODIN – European Patient Organisation for Dysimmune and Inflammatory Neuropathies, France), January 23rd 2025 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology. READ CAREFULLY please: By registering and attending the webinar you consent to the recording of the webinar and its later diffusion through the EURO-NMD websites using an YouTube Channel

ERKNet Webinar: "Streptococcus pneumoniae-HUS" by Nicole vande Kar
2025-01-28 08:00 - 09:00 (America/Chicago)

The Festival of Genomics & Biodata London
2025-01-29 08:00 - 2025-01-30 17:00 UTC
The UK’s largest life sciences event is back!
Now celebrating its 10th year, the Festival has long been the annual get-together for the UK genomics community. And with more speakers and sessions than ever before, the 2025 edition is bigger and better than ever!
As the genomics sector has expanded, so has its impact. The Festival now covers a diverse array of topics beyond genomics, including biodata, diagnostics, cancer research, healthcare, drug discovery and development, infectious diseases, AI, proteomics, multi-omics, single-cell & spatial analysis and so much more.

Building Bridges: Essential Supports for Children with Disabilities and Their Families in Schools, Healthcare, and Community
2025-01-29 11:00 - 12:00 (America/New_York)
What do children with disabilities and their families need to thrive? A team of researchers, mothers, and children and youth with disabilities set out to answer this question by exploring their experiences during the COVID-19 pandemic and beyond. Their mission? To uncover what supports and services — spanning healthcare, education, and community life — families need now and in the future.

Update on Guillain-Barré Syndrome Guidelines
2025-01-30 16:00 - 17:00 (Europe/Paris)

Research Grant Announcement 2024
2025-01-30 18:30 - 19:30 (America/New_York)

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)

Update on NMOSD and MOGAD' Meeting, 7-8 Feb 2025
2025-02-07 08:00 - 2025-02-08 17:00 (America/Sao_Paulo)
The Update on NMOSD and MOGAD meeting, organized by the European Charcot Foundation in partnership with the European Network of NMOSD and MOGAD, will take place in São Paulo, Brazil, on February 7-8, 2025.

Rare Disease Expertise, Centers & Networks: Results of the Public Survey
2025-02-12 14:00 - 15:00 (Europe/Paris)
This is a Public Webinar presenting the results of RDI Survey on rare disease expertise, care-providing centers and networks. This survey aimed to map the global landscape of rare disease expertise, identifying centers, networks, and collaborations dedicated to improving care for people living with rare diseases.
During the webinar, they will share key findings and insights from the survey, providing an overview of the current landscape in rare disease care across different regions and countries.

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.

17th International Conference on Neurology and Neuromuscular Disorders
2025-02-17 08:00 - 2025-02-18 17:00 (Europe/Paris)

3rd European Congress of Neurology and Neuropsychiatry
2025-02-17 08:00 - 2025-02-18 17:00 (Europe/Helsinki)

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

CAPA Webinar Physical Activity in Arthritis
2025-02-22 16:00 - 17:00 (America/New_York)

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

The Undiagnosed Hackathon: Driving Diagnosis Through Global Collaboration
2025-02-26 11:00 - 12:30 (America/New_York)

From Grassroots to Global: Growing Momentum Towards a WHA Resolution on Rare Diseases
2025-02-27 08:00 - 17:00 (Europe/Paris)
Join RDI for a webinar on the global movement behind the efforts to advocate for a WHA Resolution on Rare Diseases

Rare Moments: Virtual Storytelling Evening
2025-02-27 19:00 - 21:00 (America/New_York)
Don’t miss Rare Moments: Virtual Storytelling Evening
📅 February 27 @ 7:00 p.m. ET
Register: https://bit.ly/4ht5Ox9
It will be an inspiring evening of storytelling as families from across #Canada come together to share their experiences living with Duchenne #musculardystrophy.
