Canadian Rare Disease Network

The Role of Genetic Counselors in Genomic Mainstreaming
2024-11-25 10:00 - 11:00 (America/Chicago)
The Role of Genetic Counselors in Genomic Mainstreaming is an international panel discussion and interactive Q & A with Demetra Georgiou, Genomic Transformation Manager at Imperial College Healthcare NHS Trust, Jill Stopfer, Associate Director of Genetic Counseling at the Dana Farber Cancer Institute, and Laura Hercher, Director of Student Research at Sarah Lawrence College Human Genetics Program, hosted by Kira Dineen, DNA Today’s Founder, Producer, and Host.

Genetic Rare Immune Disorders Symposium (GRIDS)
2024-11-24 08:00 - 2024-11-25 17:00 (America/Halifax)
GRIDS brings together world renowned experts from across the globe to discuss recent developments and unique challenges in the field of lysosomal storage disorders and/or rare genetic diseases.

National Advocacy Update
2024-11-21 19:00 - 20:00 (America/Chicago)
Join Cystic Fibrosis Canada’s National Advocacy Update on Thursday, November 21, from 7-8 PM ET. This virtual event is open to volunteer advocates, and anyone wanting to advocate for individuals living with cystic fibrosis.

Muscle pathology of storage diseases with focus on plyglucosan and lipid storage myopathies
2024-11-21 16:00 - 17:00 (Europe/Paris)
Delivered by Prof. Anders Oldfors (University of Gothenburg, Sweden) on November 21st 2024 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 on ''mental health and behavioral difficulties in children with rare neonatal surgical disease''
2024-11-20 17:00 - 18:00 (Europe/Paris)
You are invited to join an insightful webinar hosted by ERNICA, eUROGEN, and EURORDIS on Mental health and behavioral difficulties in children with rare neonatal surgical disease: assessment, outcomes and implications for research, policy and practice’.
This interactive session will raise awareness of the mental health and behavioral challenges faced by children with rare neonatal surgical conditions,

ALS Research and Clinical Trials 101 Q&A Drop-In
2024-11-20 13:00 - 14:00 (America/Chicago)
This monthly Q&A drop-in session is available for people living with ALS, their families, caregivers, and anyone close to someone living with the disease who is seeking information or might have questions about ALS research and/or clinical trials.

'Autonomic dysfunction in movement disorders' by Pietro Guaraldi
2024-11-19 15:00 - 16:00 (Europe/Paris)
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).

ERKNet Webinar: "Highlights from the KDIGO Clinical Practice Guideline for ADPKD" by Olivier Devuyst
2024-11-19 08:00 - 09:00 (America/Denver)

The impact of rare conditions on self-identity
2024-11-18 14:30 - 16:00 (Europe/Paris)
Living with a rare condition can significantly impact a person’s identity, as they may struggle to separate who they are from their condition. This internal conflict is often intensified during formative years, affecting self-perception and even sexuality. The stigma and discrimination associated with rare diseases, especially genetic ones, add further challenges. Carriers of genetic conditions face their own fears, such as discrimination, complicating their sense of self-worth. However, finding a sense of identity beyond the disease is vital. Connecting with others in similar situations can be transformative, offering a sense of belonging that helps individuals see themselves beyond their condition. This webinar will explore the impact of rare diseases on identity from various perspectives, including the experiences of individuals, families, and those living with different conditions.

4th Annual Symposium for Researchers and Clinicians on Wiskott Aldrich Syndrome
2024-11-18 | San Raffaele Institute, Milan, Italy
The fourth international symposium for researchers and clinicians on Wiskott Aldrich Syndrome is being held in Milan, Italy and offers access to the latest research and analysis related to this rare disease.
Meeting participants will gain valuable insights into innovative perspectives in both basic and clinical research. The scientific programme will draw together experts from around the world to discuss breakthroughs in basic research, advances in clinical practice, novel therapeutic approaches and new insights into stem-cell and cellular therapies. An ideal forum to share knowledge, connect with professional colleagues and grow your professional network.

'DBS in Dystonia - the network perspective' by Juho Joutsa
2024-11-14 16:00 - 17:00 (Europe/Paris)

Rare Disease Day 2025 webinar: Healthcare professionals
2024-11-13 18:00 - 19:00 (America/Chicago)

Neuroinclusion at Work: Six Principles for Inclusion
2024-11-13 11:00 - 12:00 (America/Chicago)
In this presentation, facilitators will walk attendees through Six Principles that promote more supportive and, ultimately, successful work environments. In addition to explaining the basic concepts of each principle, attendees will receive practical, actionable ideas and strategies to apply the principles in your own workplace.

2024 International Congress for Ataxia Research
2024-11-12 08:00 - 2024-11-15 17:00 UTC
Today marks the opening of the largest-ever scientific conference on ataxia research — the International Congress for Ataxia Research (ICAR) is welcoming a record-setting 600 attendees. The London-based conference runs through to November 15 and will be a comprehensive scientific review of new research into the ataxias, covering topics from advances in genetics and disease mechanisms to therapeutics approaches, as well as a debate on emerging ataxia research topics. ICAR represents a strong collaboration between global advocacy organizations focused on advancing research for ataxia, including co-hosts Ataxia UK, Friedreich’s Ataxia Research Alliance (FARA), National Ataxia Foundation (NAF), and Ataxia Global Initiative (AGI).

Montreal Patient Education Meeting – IN-PERSON
2024-11-09 08:30 - 13:00 (America/New_York)

Understanding Your Lab Results
2024-11-08 16:00 - 17:00 (America/Halifax)
Making sense of your lab tests involves more than just knowing why the test is done. It’s also important to understand what the results mean and what can affect the results. Join the webinar to better understand how your results affect your treatment and help you to manage your MDS, AA or PNH.

Global Congress of the GANSID: November 8-9, 2024
2024-11-08 08:00 - 2024-11-09 17:00 UTC
GANSID Congress 2024 is the 2nd Congress of the Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID) taking place virtually to ensure all clinicians, people with hereditary blood disorders, and global advocates can participate from any part of the world.

Nutrition for your Energy and Health
2024-11-07 19:00 - 20:00 (America/New_York)

Measuring the Value of Genomics in Healthcare
2024-11-07 13:00 - 14:00 (America/Chicago)
This virtual workshop will focus on exchanging strategies, tools and experience in measuring the value of genomic testing in healthcare. Demonstrating value is key in informing health technology assessments (HTAs), clinical practice and policy decisions and yet standardized outcome measures and frameworks are still in their infancy. The task of demonstrating value is further complicated by genomic technologies and their clinical applications continuing to evolve at pace.

IPNA Webinar: 2024 ISPD guidelines on peritonitis and exit site infection in children receiving peritoneal dialysis
2024-11-07 08:00 - 09:00 (America/Denver)

CF Canada Community Townhall
2024-11-06 12:30 - 13:30 (America/Chicago)
Register today! Join the Community Townhall Meeting on Wednesday, November 6, 12:30PM EST/ 9:30 AM PST. You will hear from CF Canada’s President and CEO Kelly Grover on the latest updates in CF research and care, be inspired by stories of how Canadians CF community members are shaping a future without limits and learn how you can help.

Clinical Trials Ontario Conference
2024-11-06 08:00 - 2024-11-07 17:00 (America/Halifax) | Hilton, Toronto, Toronto, Ontario, Canada
The CTO Clinical Trials Conference is a leading Canadian forum to drive innovation in clinical trials, including leaders from the pharmaceutical and medical device industries, academic and healthcare leaders, representatives from patient groups, health charities and research institutions. This annual event provides a unique opportunity for members of our multi-stakeholder sector to collaborate, exchange knowledge and advance clinical trials.

Diagnostic approach to childhood-onset chorea' by Juan Darío Ortigoza-Escobar
2024-11-05 19:00 - 20:00 (America/Chicago)

FSHD Clinical Updates
2024-11-05 17:00 - 18:00 UTC
Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) are pleased to invite you to a webinar on FSHD clinical updates. This webinar is for Canadian clinicians, academics, researchers, 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. AGENDA: Chair and Speaker: Dr. Lawrence Korngut Speakers: Dr. Patrick Horn: Results of a phase 3 study of losmapimod in the treatment of FSHD Dr. Eva Chin: Catalysing Innovation in FSHD Therapeutics Objectives: – Innovative new therapies on the horizon for FSHD – The role of patient foundations and patient-funded R&D for accelerating novel therapies – Understand the outcome to the REACH study of losmapimod in FSHD The NMD Rounds & Educational Webinars is a self-approved group learning activity (Section 1) as defined by the Maintenance of Certification Program of the Royal College of Physicians and Surgeons of Canada. If you have any questions, please email <research@muscle.ca> If you would like to learn more about NMD4C and to become a member: https://neuromuscularnetwork.ca/become-a-member/

2024 Annual Pain Centre Conference - Building Bridges to Reduce Disparities in Pediatric Pain
2024-11-05 | toronto, ontario, 686 Bay Street, Toronto, Ontario, M5G 0A4, Canada

EDS ECHO Summit: Diet and Nutrition
2024-11-02 09:00 - 18:00 (America/Chicago)
The Ehlers-Danlos Society is delighted to welcome you to register for the EDS ECHO Summit: Diet and Nutrition, a virtual event held on November 2, 2024. This event is suitable for community members, their friends, families, and caregivers, as well as healthcare professionals.

The Association X Fragile Québec Conference
2024-11-02 08:00 - 18:00 UTC

Virtual Event: Understanding EDS/HSD+ Symptomology, Diagnoses and Treatment - A Guide for Primary Care Practitioners & Physician Specialists
2024-11-02 08:00 - 17:00 (America/Chicago)
This Conference is for primary care practitioners and physician specialists who encounter patients with complex health issues and chronic pain in their clinical practice, which may or may not be related to Ehlers-Danlos Syndromes or hypermobility Spectrum Disorders (EDS/HSD+).

CRDN Townhall – An Update on the Co-Development of our Strategic Plan
2024-10-31 12:00 - 13:00 (America/Denver)
Join the Canadian Rare Disease Network (CRDN) – Réseau Canadien des Maladies Rares – for a dynamic townhall to engage with thought leaders, experts, and the rare disease community as we explore and shape the future of rare disease care and research in Canada. This townhall will provide an overview of the CRDN and its draft strategic plan. Following the presentation, there will be an opportunity to ask questions and contribute to the co-development of CRDN’s strategic plan. Whether you are a patient, caregiver, researcher, healthcare provider, advocate, or other member of the rare disease community, your voice is vital in building a more integrated, inclusive, and compassionate approach to rare disease care and research in Canada. Register now to be part of this conversation!

Developing Therapies in Rare Neuromuscular Disease
2024-10-31
The symposium is designed for industry professionals involved in developing treatments for rare neuromuscular diseases and offers a unique opportunity to learn from past mistakes, engage with leading experts, and gain valuable insights into the challenges and opportunities within the field. Attendees can expect interactive sessions and opportunities to pose questions to the speakers, fostering meaningful dialogue and knowledge exchange.
