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.

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.

Rare Disease Day 2025: Unlocking Hope for Rare Diseases
2025-03-01 09:00 - 13:00 (America/Denver)
On Saturday March 1st, the Rare Disease Network of Alberta (rDNA) will be hosting Rare Disease Day 2025: Unlocking Hope for Rare Diseases in Edmonton. Members from their team will be attending!

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

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.

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

Rare Disease Day and World Birth Defects Symposium
2025-02-28 09:00 - 13:00 (America/New_York)
Join on February 28, 2025, for the Rare Disease Day and World Birth Deficit Symposium, an event dedicated to raising awareness and fostering meaningful discussions on the challenges faced by individuals and families affected by rare diseases. This symposium will bring together patients, caregivers, healthcare professionals, and community advocates to share experiences, promote equity, and drive change.

Rare Disease Day 2025 University of Alberta
2025-02-28 08:00 - 16:00 (America/Denver)

Rare Disease Day
2025-02-28
Rare Disease Day is the globally coordinated movement on rare diseases, initiated in 2008 and led by EURORDIS and its 70+ national alliance patient organization partners working towards
equity in social opportunity, healthcare, and access to therapies for people living with a rare disease.
Rare Disease Day is held on the last day of February, the rarest day of the year, to highlight the challenges faced by 300 million people worldwide living with a rare disease. Over the last 17 years,
Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, multicultural, and multi-lingual, but united in purpose. Rare Disease Day speaks for 300 million people worldwide living with a rare disease, as well as their families and carers. Events and activities take place in over 100 countries, banging the drum and
building momentum for the rare disease community. The campaign works in partnership with individuals and patient groups, policymakers, governments, foundations, NGOs, pharmaceutical and biotech companies around the world to raise awareness of rare diseases. It uses innovative approaches to build community, create empathy and advocacy for those with 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.

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

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

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

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

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

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

17th International Conference on Neurology and Neuromuscular Disorders
2025-02-17 08:00 - 2025-02-18 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.

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

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.

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.

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

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.

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.

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.

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

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

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.

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.

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