Canadian Rare Disease Network

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)

MDA Clinical and Scientific Conference
2025-03-16 08:00 - 2025-03-19 17:00 (America/Chicago)

NMOSD in sub-Saharan Africa
2025-03-17 18:00 - 19:30 (Europe/Paris)
The experts will provide insights and answer questions about the prevalence and incidence of NMOSD, diagnostics, available treatments, immunizations, clinical trials, and more. Patients, caregivers, clinicians, researchers, and advocates from around the world are invited to attend.
Live participants will have the opportunity to ask questions directly to the experts. The webinar will be recorded and made available for replay on TSF’s YouTube channel.

Peripheral Nerve Imaging with Focus on Inflammatory Neuropathies
2025-03-20 16:00 - 17:00 (Europe/Paris)

13th ISNS European Regional Meeting Luxembourg
2025-03-23 08:00 - 2025-03-26 17:00 (Europe/Paris)
Newborn Screening LIVE from the Heart of Europe

Dragon Claw Friends Webinar - Breaking Down Barriers – Are Patients Aware of Their Autoimmune Disease Treatment Options?
2025-03-27 10:00 - 11:00 UTC
Despite significant advancements in the treatment of autoimmune diseases, many patients remain unaware of their options. Social media platforms are filled with stories of people struggling with uncontrolled symptoms—so why aren’t these breakthroughs reaching those who need them most? To explore this issue, Dragon Claw Charity Australia, in collaboration with CaPPRe, has conducted research into the awareness gap among patients with rheumatology, dermatology, and gastroenterology-related autoimmune diseases.

Navigating Life with Dysimmune and Inflammatory Neuropathies: Q&A Session on Quality of Life and Management
2025-03-27 16:00 - 17:00 (Europe/Paris)

Understanding what matters to children and families: The socioeconomic impact of childhood arthritis
2025-03-31 08:30 - 09:30 (America/New_York)
This presentation will share findings from the Health Economics research lead by
Dr. Marshall as part of the international UCAN CAN-DU and CURE research program
on childhood arthritis.

Information Session: 2025-2026 Funding Opportunity for Rare Disease Registry Improvement
2025-04-02 13:00 - 14:00 (America/Halifax)

Conscience Symposium on Open Drug Discovery
2025-04-07 08:00 - 2025-04-08 17:00 (America/New_York)

Child Health and Wellness Seminar: Discovery Series: Understanding Mental Health and Neurodiversity Through Systems Neuroscience
2025-04-07 08:30 - 09:30 (America/New_York)
Understanding and supporting mental health and neurodiversity requires insight into the brain systems that regulate attention, motivation, mood and thought. Dr. Gruber’slab studies the brain’s role in these functions and how they are shaped by risk factors such as stress, inflammation and abused drugs.

Caregiving Essentials Webinar: Mapping a Brighter Future for Canadian Caregivers
2025-04-07 10:00 - 11:00 (America/Halifax)

Five Good Ideas to support and benefit from working caregivers in your workplace
2025-04-09 11:00 - 12:00 (America/New_York)

RareKids-CAN Annual Conference
2025-04-10 08:00 - 2025-04-11 17:00 (America/New_York)
The mission of the RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network Strategic Planning Conference is to collaboratively shape the future of pediatric rare disease research and clinical trial capacity in Canada. By bringing together over 100 patient and family partners, researchers, sub-platform leaders, and key stakeholders, they aim to co-develop a shared vision that accelerates pediatric drug development and progress in clinical trials, improves treatment access, and strengthens national and international partnerships.

RDI: Leveraging the EML for Access to Rare Disease Treatments
2025-04-10 14:00 - 15:00 UTC
The WHO Essential Medicines List (EML) is a critical instrument for advancing Universal Health Coverage (UHC) by ensuring equitable access to essential medicines. However, its role in rare disease treatment remains under-recognized. This webinar will explore how the EML can serve as a powerful tool to improve access to treatments for persons living with a rare disease (PLWRD) at both global and national levels.
Webinar Objectives:

Gain a deeper understanding of the WHO Essential Medicines List and its significance for rare diseases
Learn about the findings from RDI’s Essential Medicine Working Group on challenges, best practices, and opportunities for regarding the application process of EML
Hear about call-to-action to enhance global and national access to essential medicines

ACE Inhibitors as a Cardioprotective Treatment in Dystrophinopathies.
2025-04-17 10:00 - 11:00 (America/Halifax)
Join C-PATH on April 17, noon ET, for an insightful presentation by Dr. Karim Wahbi, Professor of Cardiology at the University of Paris and head of the Reference Center for Neuromuscular Cardiomyopathies. Dr. Wahbi specializes in the clinical management of cardiomyopathies, with a focus on neuromuscular diseases like Duchenne muscular dystrophy.

Mitochondrial Transplantation and Next Generation Therapeutics Conference
2025-04-27 08:00 - 2025-04-29 17:00 (America/Halifax)
Join Northwell Health on April 27-29, 2025, at Hofstra University on Long Island (NY) for a unique forum for the presentation and discussion of new research developments in mitochondrial transfer and transplantation.

Summit 2025: Ending The Diagnostic Odyssey
2025-04-28 08:00 - 2025-04-30 17:00 UTC | washington, WA, United States
A first-of-its kind collaborative event for Undiagnosed, Ultra-Rare & Rare disease industry, clinical and community leaders.
The diagnostic odyssey for rare diseases is a significant challenge, often leaving patients and families lost in a maze of tests, misdiagnoses, missed opportunities to participate in clinical trials, and delayed treatment. Summit 2025 brings together a diverse group of stakeholders – patient advocates, industry leaders, policymakers, clinicians, researchers and payers – to chart a collaborative path towards a future where timely and accurate diagnoses are a reality for all with rare diseases.

Canadian Rare Disease Innovation Showcase 2025
2025-04-28 16:00 - 20:15 (America/Chicago)
Join us on Monday, April 28, 2025, at The Westin Hotel in downtown Calgary (or virtually) for an inspiring afternoon dedicated to innovation, collaboration, and progress in rare disease research and care.
This event will spotlight innovative advancements and inspiring stories from Canada’s rare disease community. Through engaging lightning talks and networking opportunities, you’ll connect with experts, exchange ideas, and be part of the movement driving meaningful change.
Every discovery has the power to change lives. Be part of the conversation and help shape the future of rare disease care in Canada.

Health Data for All of Us: A Public Dialogue on AI in Health
2025-04-29 08:00 - 16:00 (America/New_York)
Join HRDN conversation about key ethical, equity and privacy challenges related to AI and health!

Save the Date: Rare Disease Day 2025 Conference
2025-04-29 08:00 - 2025-05-01 17:00 (America/Denver)

Genome BC’s Genomics Forum 2025
2025-04-30 08:00 - 17:00 (America/Vancouver)

Myotonic Dystrophy Foundation Conference 2025
2025-05-01 08:00 - 2025-05-04 17:00 (America/New_York)
MDF invites you to attend the Professional Track at the 2025 MDF Conference in Indianapolis, Indiana from May 1st to May 4th! Sometimes called the “DM family reunion” – the MDF Conference is an event to unite the DM community in our journey towards treatments and a cure for myotonic dystrophy (DM). This year’s program includes educational sessions exploring research, drug development, symptom management, and other critical topics for DM families, plus opportunities for formal and informal networking, wellness, and fun!

FSHS 360 Conference
2025-05-03 08:00 - 17:00 (America/Toronto)
Patients and family members affected by FSHD are invited to attend an event hosted by the FSHD Canada Foundation and the FSHD Society! The FSHD 360 Conference Ontario is an event where patients and family can meet leaders in FSHD research and hear the latest updates, including presentations from NMD4C investigators Dr Lawrence Korngut and Dr Hanns Lochmuller.

FSHD 360 Conference
2025-05-03 08:00 - 17:00 (America/Toronto)
FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance to hear from the research and advocacy leaders in Ontario as well as from biopharmaceutical companies that are working on FSHD therapies. Get answers to your questions about your health, maintaining optimal function through physical therapy, exercise, assistive devices, and more. Don’t miss out on the opportunity to meet patients and families and network with FSHD Society leaders and activists in the community!

Applying Principles of Equity, Diversity, Inclusion, and Accessibility in Patient Engagement with Equity Seeking Groups
2025-05-05 15:00 - 17:00 (America/New_York)
