Canadian Rare Disease Network

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)

CIHI-Foundations of Patient Partnering Virtual Sessions
2025-01-23 16:00 - 19:00, 2025-01-15 13:00 - 16:00 (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).

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

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.

2025 International Scientific Conference on Albinism
2025-01-21 08:00 - 2025-01-24 17:00 (Europe/Paris)
The Global Albinism Alliance (GAA) is very pleased to announce the 2025 International Scientific Conference on Albinism – ISCA 2025, that will be held virtually on January 21-24, 2025.
ISCA is THE meeting point worldwide for all scientists interested in sharing and improving knowledge of the biomedical aspects of albinism and, more generally, improving the health of those with albinism. It builds on the momentum created in 2012 with the launch of the EDA (European Days of Albinism) conference series that evolved into ISCA in 2022.

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.

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

Webinar-Genetic Carriers of PKU-Possible Health and Metabolic Implications?
2025-01-15 12:00 - 12:30 (America/New_York)

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.

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.

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

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.

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.

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

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.

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

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.

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

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.

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

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.

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

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.

Spinal Muscular Atrophy Outcome Measures Workshop (English Language)
2024-12-03 08:00 - 17:00 (America/Halifax) | Le Centre Sheraton Montreal, Montreal, Quebec, Canada
Earlier this year, NMD4C, MDC and Quebec SMA Network hosted the first interactive training session for French-speaking physiotherapists and occupational therapists on assessment measures and practices for Spinal Muscular Atrophy (SMA).
To complement this training session, the NMD4C will be hosting an English-language interactive training workshop on standardizing assessment practices in SMA outcome measures.
This workshop will be taking place the day before the Allied Professionals Forum in Montreal.
Please ensure you register before the deadline of June 18th, 2024.

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

Child Health Hub in Transition to Adult Healthcare
2024-12-02 08:00 - 2024-12-03 17:00 (America/Denver)
The Child Health Hub in Transition to Adult Healthcare is excited to be hosting the 2nd Transition to Adulthood Pop-Up event on December 2-3, 2023, at the beautiful Hyatt Regency in downtown Vancouver. This event aims to bring together youth, families, trainees, researchers, clinicians, and policy/decision makers to celebrate the best of what we are learning, and doing, to help young people to develop fully, even when they are challenged by health conditions. For those unable to join in-person, aspects of the event will be made available in a virtual format.

Organoid Symposium & Workshop
2024-12-02 08:00 - 2024-12-03 17:00 UTC
Stem Cell Network is excited to partner with the University of Toronto’s Applied Organoid Core in delivering the 2024 Organoid Symposium: Generation and Applications of iPSC-Derived Organoid Models!
Human pluripotent stem cell (hPSC)-derived organoid research offers unique opportunities to explore human disease, advance personalized drug discovery, and study complex biological processes such as development and disease progression.
This two-day Symposium, offered in a hybrid format, will highlight cutting-edge research and developments in the field of organoids. The symposium includes national and international speakers with expertise in the development and utilization of organoid models across a range of tissue types.

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!
