Canadian Rare Disease Network

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.

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.

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

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).

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.

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

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

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.

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.

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

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

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.

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,

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.

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.

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.

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.

Fall 2024 Rare Disease Conference
2024-11-26 08:00 - 2024-11-27 17:00 (America/Halifax)

'Differential diagnosis aside from neuroimaging for non-Leukodystrophy white matter diseases' by Nicole Wolf
2024-11-26 15:00 - 16:00 (Europe/Paris)

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!

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.

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.

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

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.

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.
