Canadian Rare Disease Network

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.

CORD Rare Disease Day 2025 Webinar
2025-02-28 12:00 - 13:00 (America/New_York)
CORD is hosting a special webinar on Friday, Feb 28 from 12-1pm EST so that everyone from across Canada can tune in and help put that funding to work. Here’s what they’ll discuss: – Ending the diagnostic odyssey with CHEO’s ThinkRare – Treating and tracking rare diseases at BC Cancer – Caring for complex kids and adults at BC Children’s Hospital – The challenge of treating adults with SMA in Manitoba – Measuring the socioeconomic impact of rare diseases on families and health systems

Celebrate Rare Disease Day: Advancing Clinical Trials Together
2025-02-28 12:00 - 13:30 (Europe/Paris)
On February 28th, in recognition of Rare Disease Day, the European project DREAMS (www.dreamshorizon.eu) invites you to a thought-provoking online webinar: “Clinical Trials in Focus: Innovations and Patient Perspectives in Rare Diseases”. Join leading experts as they explore advancements in clinical trial methodologies, outcome measures, and lessons learned from research in muscular disorders.

Thriving with Duchenne
2025-02-28 13:00 - 14:00 (America/Denver)

RQMO 2025 International Rare Disease Day
2025-03-01 10:00 - 17:00 (America/New_York)
To celebrate International Rare Disease Day, the RQMO is organizing an activity on March 1, 2025 at the Sandman Hotel located at 999, rue de Sérigny in Longueuil.
The event will take place from 10 a.m. to 3 p.m. and will be followed by a networking cocktail from 3 p.m. to 5 p.m.
The activity will be presented in hybrid, you will have the possibility to attend in person or by zoom.

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.

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).

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

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)

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)

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)

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

Thinking Outside of Your In Box: Innovative Fundraising Opportunities
2025-04-10 14:30 - 16:00 (America/New_York)
Leadership in rare disease advocacy requires creativity and resourcefulness. This session highlights unconventional fundraising strategies and case studies of successful campaigns. Participants will discover how to secure funding through innovative approaches, such as partnering with non-traditional sponsors, and receive actionable tips to implement these ideas in their own organizations.

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.

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.

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