Canadian Rare Disease Network

RE(ACT) Congress and IRDiRC Conference
2025-03-05 08:00 - 2025-03-07 17:00 (Europe/Brussels) | Brussels, Belgium, Brussels, Belgium
The RE(ACT) Congress and IRDiRC Conference 2025, held jointly by the BLACKSWAN Foundation, the International Rare Diseases Research Consortium (IRDiRC) and the European Rare Diseases Research Alliance (ERDERA). From March 5th to 7th, 2025, we will gather in the vibrant city of Brussels (Belgium) for an unparalleled exchange of knowledge and ideas.
The RE(ACT) Congress will be celebrating its 8th edition, and this convergence serves as a beacon for scientific innovation. Our assembly is comprised of visionary leaders, distinguished experts, and emerging talents from diverse scientific domains, converging to unveil groundbreaking research, foster dialogue, and shape policies crucial to rare disease research.
This edition of RE(ACT) Congress and the 6th IRDiRC in person Conference, is in partnership with the European Rare Diseases Research Alliance (ERDERA, planned to start in September 2024), EURORDIS-Rare Diseases Europe, and Rare Diseases International (RDI), and symbolizes a unified commitment to surmounting rare disease challenges through collective action and shared knowledge.

Webinar - Initiating Clinical Trials in Canada
2025-03-05 12:00 - 13:00 (America/New_York)

ALS Clinical Trials Unboxed
2025-03-06 13:00 - 14:00 (America/Denver)
Join ALS Canada, on March 6 at 1:00 pm ET, for ALS Clinical Trials Unboxed. In this webinar, Dr. Lauren Kett, Medical Director of Clinical Development at Amylyx Pharmaceuticals will present on the Phase 1 LUMINA study, an investigational antisense oligonucleotide (ASO) targeting calpain-2 for the potential treatment of ALS.

Navigating the Transition from Pediatric to Adult Neuroimmunology Care
2025-03-06 14:00 - 15:00 (America/New_York)
This webinar will provide an overview of the transition from pediatric to adult medical care, featuring insights from a pediatric neurologist, social worker, and a neuropsychologist.
Topics will include maintaining continuity of care, managing complex medical conditions, self-advocacy in healthcare settings, and addressing social and emotional considerations. The discussion aims to support patients, families, and caregivers in navigating this important transition effectively.

Empowering Patients 2025: A Cell and Gene Therapies Summit
2025-03-12 08:00 - 2025-03-13 17:00 (America/Denver)
This free, virtual event in two half-day sessions offers educational discussions for foundation leaders, patients, and caregivers to better understand #GeneTherapy and #CellTherapy.

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.

Webinar on “Neurogeriatric Aspects of Huntington’s Disease and Chorea”
2025-03-18 15:00 - 16:00 (America/Chicago)
Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Rare Disease Day 2025 by McGill’s RareDIG
2025-03-18 18:30 - 21:30 (America/Halifax)
McGill’s RareDIG is excited to welcome you to their seventh edition of Rare Disease Day! Students, researchers, physicians, patients, and community members, including the RQMO, will meet at Jeanne Timmins Amphitheatre at The Neuro (Montreal Neurological Institute-Hospital) in Montreal on March 18th at 6:30 pm to discuss the challenges faced by people with rare diseases, research and advocacy efforts. Poster presentations will also be prepared by student researchers with a keen interest in making a difference in the rare disease field.
Presentations are open to all and free of charge. Presentations will be in English only, and the event will be held in person only, with no online broadcast.

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

Save-The-Date: RareKids-CAN Virtual Information Session
2025-03-24 08:00 - 11:00 (America/New_York)
During this information session, you will gain an overview of RareKids-CAN, build connections within the community, and more!

AIHA Awareness Day 2025
2025-03-25 07:00 - 15:00 (America/New_York)
AIHA Awareness Day 2025 brings together patients, care partners, physicians, researchers, industry leaders, and legislators for virtual presentations that honor and support the journeys of those affected by Autoimmune Hemolytic Anemia and other Acquired Hemolytic Anemias. This day is a powerful call to action to inspire us all to champion hope, understanding, and awareness.

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)

Vancouver Patient Education Meeting – IN-PERSON
2025-03-29 08:00 - 13:30 (America/Los_Angeles)

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.

Transdiagnostic approaches vs precision health in neurodevelopmental conditions: perfect match or irreconcilable differences?
2025-04-01 12:00 - 13:00 (America/New_York)
Dr. Anagnostou will explore the intersection of transdiagnostic approaches and precision health in neurodevelopmental conditions. With significant investments in both precision medicine and needs-based care, how can learning health systems reconcile these two approaches? This talk will examine emerging data, recent innovations, and ways to integrate these frameworks to improve care for children and youth with neurodevelopmental conditions.

National Healthcare Provider Workshop
2025-04-01 12:30 - 13:30 (America/New_York)
In celebration of National Caregiving Day, the Canadian Home Care Association (CHCA) is hosting the National Healthcare Provider Workshop on, which will bridge insights from Hope for the Best, Plan for the Rest (McMaster University) and the CHCA eiCOMPASS Project, highlighting the transformative work of both initiatives.

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.

13th ISSAID Meeting
2025-04-08 08:00 - 2025-04-10 17:00 (Europe/Helsinki) | paris, Paris, France
13th Meeting of the International Society of Systemic Autoinflammatory Diseases (ISSAID), which will take place in Paris from April 8th to 10th, 2025, at the “Cité Internationale” – a magnificent haven of peace near many transport amenities where you will particularly enjoy the sumptuous Honorat lounge overlooking a lush green park.
April in Paris offers a delightful mix of mild weather, budding greenery, and a relaxed atmosphere, perfect for strolling along the Seine after a day of work.
The ISSAID 2025 meeting will provide an opportunity for pediatric and adult rheumatologists, immunologists, general pediatricians and internists, scientists, and others interested in systemic autoinflammatory diseases to come together to share new findings related to autoinflammation and to learn about recent advances in this field.
The ISSAID 2025 meeting will highlight the topic of neurologic inflammation, and we hope it will facilitate better assessment, care, and research on this particularly complex subject. We will present current topics such as artificial intelligence, mechanisms of inflammation, and new diseases.
The ISSAID 2025 meeting will promote interactions between old and new generations so that the science of SAIDs can be transmitted and best adapted to societal transformations and the challenges of tomorrow’s medicine.

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.

Neuropsychiatry & Mental Health 2025
2025-04-24 08:00 - 2025-04-25 17:00 UTC
Theme: Innovations in Neuropsychiatry and Evolution in Medicines of Neurological Disorders for Better Mental Health.

Limb-Girdle Muscular Dystrophy Masterclass
2025-04-24 08:00 - 2025-04-25 17:00 (America/New_York)
Are you involved in diagnosing or managing Limb-Girdle muscular dystrophy (LGMD)? This April 2025, join TREAT-NMD™ in Montreal, Canada, for an in-person educational event designed for healthcare professionals in the neuromuscular field.

Lunch N’ Learn: Talking Research with Patient Partners
2025-04-24 12:00 - 13:30 (America/Toronto)
Join this virtual workshop on Zoom on April 24, 2025, at 12:00 p.m. (EST) to develop communication skills for engaging with patient partners in research.
Hosted by the HBHL EDI Trainee Committee, the session features medical librarians and a patient advocate sharing insights on plain language and patient-oriented research.
Presenters:

Sabrina Burr, MISt – Librarian of the Neuro-Patient Resource Centre at The Neuro-MNI
Paule Kelly-Rhéaume – Medical librarian at the McGill University Health Centre
JoAnne Mosel, CPA – Advocate in the Rare Disease space with over 30 years of experience

Navigating Conflict with Care: Building Stronger Patient Engagement Teams in Research
2025-04-25 11:30 - 12:30 (America/Toronto)
​Conflict is a natural part of teamwork—but in family engagement in research, how we navigate it matters. Join them for a compassionate conversation on resolving conflicts in family engagement teams, fostering trust, and strengthening collaboration.
