Outcomes and challenges in Spina Bifida: bridging adolescence and adulthood
2024-11-27 18:00 - 19:00 (Europe/Paris)
This webinar explores the challenges individuals with spina bifida face from adolescence to adulthood, focusing on patient-reported outcomes (PROMs) and urological management. Neurogenic bladder, a prevalent complication in SB, often leads to incontinence, hydronephrosis, and urinary tract infections, which may significantly affect quality of life (QoL). Advances in medical and surgical management have reduced the risk of renal failure, yet continence remains a persistent issue. Drawing on literature on PROMs and urological outcomes, we examine general health and bladder-specific outcomes, including tools to examine these. Factors influencing QoL include clean intermittent catheterization, transition readiness, mental health, and social support. Despite multimodal interventions, incontinence continues to impact daily life. The session highlights the importance of PROMs and multidisciplinary approaches to optimize care and improve long-term outcomes for SB patients.

ENVISAGE - IAACD global listening and sharing session
2024-11-29 14:00 - 15:00 (America/New_York)
Travel the globe with the International Alliance Academies of Childhood Disability (IAACD) in a 24-hour VIRTUAL listening and sharing session to celebrate the International Day of Persons with Disabilities! This year’s theme is “Families: Who Cares for Them?”. For the first time ever, Canada is represented in this event!

ERKNet Webinar: "FSGS in adults" by Peter Conlon
2024-12-03 08:00 - 09:00 (America/Chicago)

Accessing Data through DASH
2024-12-04 11:00 - 12:00 (America/Denver)
Learn how HDRN Canada’s Data Access Support Hub (DASH) can help health researchers access multi-regional data.

Hemophilia gene therapy webinar – December 4, 2024
2024-12-04 19:00 - 20:00 (America/New_York)

IPNA Webinar: Nutritional management during AKI
2024-12-05 08:00 - 09:00 (America/Chicago)
The webinar will discuss the current recommendations on nutritional management among children suffering from acute kidney injury.

Kabuki Syndrome Foundation: Annual Research Conference
2024-12-05 08:00 - 17:00 UTC

Duchenne Patient Academy 2024!
2024-12-06 08:00 - 2024-12-07 17:00 UTC
This year, the 8th edition of Duchenne Patient Academy will take place. The Academy provides online training for Duchenne and Becker muscular dystrophy (DMD/BMD) patient advocates.
Duchenne Patient Academy 2024 will take place on Friday December 6, and Saturday December 7 fully online.
Over the course of 2 days, Duchenne Patient Academy attendees will listen to speakers and attend panel discussions moderated by experts in their respective fields. As with last year, attendees have the opportunity to become involved in the dialogue and share their experiences.

ACT Canada Webinar Series: Health Policy Trials Unit: Closing the gap between evidence and policy with David Campbell, Amity Quinn & Terry Saunders-Smith (Calgary AB)
2024-12-09 15:00 - 16:00 (America/New_York)
This webinar will provide an introduction to the Health Policy Trials Unit at the University of Calgary, which was established with funding from ACT Canada. The presenters will define policy trials and illustrate key elements and challenges of policy trials through examples of past and current projects. Learning objectives: 1. Understand what health policy trials are 2. Recognize why and when to conduct policy trials 3. Identify key components and challenges of health policy trials

Mental health trajectories and targeted treatments in neurodevelopmental conditions
2024-12-11 12:00 - 13:00 (America/New_York)
This presentation will summarize existing evidence as well as evidence gaps regarding mental health outcomes in children with neurodevelopmental conditions including rare genetic disorders.

Conférence sur les mesures et programmes financiers pour les personnes en situation de handicap
2024-12-11 12:30 - 13:30 (America/New_York)

ALS Canada Webinar: Exploring Holistic Therapies
2024-12-11 13:00 - 15:00 (America/New_York)
Join ALS Canada and a panel of presenters for the ALS Canada Webinar: Exploring Holistic Therapies to learn about various holistic therapies and techniques including Reiki, deep breathing, intuitive energy healing, and wellness drumming. Each presenter will have a small presentation and demonstration.

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.

CPD-Accredited Webinar | Exploring the clinical trial landscape in Duchenne muscular dystrophy: Challenges, opportunities and consideration of a possible cholesterol metabolism-related target
2025-01-14 18:00 - 19:00 (America/New_York)
NMD4C and MDC are pleased to invite you to a webinar on Exploring the clinical trial landscape in Duchenne muscular dystrophy: Challenges, opportunities and consideration of a possible cholesterol metabolism-related target. NMD4C and MDC are providing organizational and technical support. This is a an independent clinical/academic webinar with no industry sponsorship or influence.

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.
