Canadian Fragile X Research Rounds: Protein Replacement Therapy for Fragile X Syndrome
2024-12-12 12:00 - 13:00 (America/Denver)

ERDERA Joint Transnational Call 2025 Information Webinar
2024-12-17 14:00 - 16:00 (Europe/Paris)
This Webinar will:

Provide general information on the call, including its scientific goals, administrative aspects, support services, and patient engagement strategies.
Address your questions through two dedicated Q&A sessions.

Webinar: How do rare conditions impact family and social relationships
2024-12-19 11:30 - 13:00 (Europe/Paris)
This webinar will explore how rare conditions shape and inform social and family relationships, drawing from the lived experience of affected individuals, caregivers and parents, and siblings. The outcome of the webinar will be a factsheet to help increase awareness about the impact of rare conditions on both social and family relationships, and how to support these.

ERKNet/ESPN Webinar: "Non-cystinosis Fanconi Syndrome" by Elena Levtchenko
2025-01-14 08:00 - 09:00 (America/Chicago)

ERDERA Joint Transnational Call 2025 Extended Information Webinar
2025-01-14 14:00 - 16:00 (Europe/Paris)
The European Rare Diseases Research Alliance (ERDERA) invites you to the Joint Transnational Call (JTC) 2025 Extended Information Webinar.
Objectives of this webinar:
The webinar scheduled for January 14th aims to provide educational and preparatory support to applicants at the pre-proposal stage, focusing on key elements that enhance the quality of their submissions. The objectives include:
Inform applicants about lessons learned about the evaluation.
Guide applicants with key translational, regulatory, data managing, and methodological considerations for drafting strong pre-proposals.
Address your questions through dedicated Q&A sessions.

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.

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)

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.

Diagnosis and Treatment of Nodopathies
2025-02-06 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.

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

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)

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.

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.
