Supporting the Mental Health Needs of Rare Disease Patients, Families, and Communities
2024-10-16 15:00 - 16:00 (America/Chicago)
During this session, Dr. Al Freedman will provide tools and resources for supporting the mental health needs of rare disease patients, families and communities.

Update on treatment in Pompe disease
2024-10-22 15:00 - 16:00 (America/Chicago)
Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) are pleased to invite you to a webinar on treatment updates in Pompe disease. This case-based rounds webinar is for Canadian clinicians, academics, and trainees with an interest in neuromuscular disease.

'Neurogeriatric and neurological aspects in palliative care of MSA, PSP and advanced PD' by Martin Klietz
2024-10-22 19:00 - 20:00 (America/Chicago)
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).

EURORDIS Mental Health & Wellbeing Open Webinar
2024-10-23 14:00 - 15:30 (Europe/Paris)

The 4th Annual Canadian Children, Youth and Communities (CCYC) Health In | Equity Conference
2024-10-24 08:00 - 2024-10-25 17:00 UTC
The Canadian Children, Youth and Communities (CCYC) In | Equity Conference is an interdisciplinary conference designed to bring together pediatric health and allied health care professionals to address health care inequities from birth to adolescence using a family-centred approach.
This conference explores health equity topics specific to marginalized communities in the Canadian health care system and offers approaches that can be implemented to address barriers in accessing healthcare for under serviced, high-risk and economically disadvantaged children and youth.

Epilepsy Treatments in Rett Syndrome
2024-10-24 13:00 - 14:00 (America/Chicago)
The International Rett Syndrome Foundation (IRSF) invites you to this live RettEd session with a goal of educating families on an approach to the treatment of epilepsy in Rett syndrome

L4L Session: Sickle Cell Disease and Complications including Stroke
2024-10-26 09:00 - 10:00 (America/Chicago)
The SCAGO is excited to announce the October Learning for Life session “Sickle Cell Disease and Complications including Stroke” slated for Sat. October 26th! Attendees will leave the session with a rich knowledge of how to prevent complications of Sickle Cell Disease and improve their health outcomes.

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!

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+).

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.

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

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.

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)

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.

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

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.

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)

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.

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.

'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.
