Designing effectiveness-implementation hybrid trials in child health research
2024-09-11 12:00 - 13:00 (America/Halifax)
The webinar will introduce effectiveness-hybrid designs, showcase examples, and outline important considerations for conducting these types of studies. It will also briefly summarize tensions that may occur in conducting implementation research and mention tools to support implementation planning and execution.

EMPOWER & INSPIRE 3RD ANNUAL LEIGH SYNDROME SYMPOSIUM
2024-09-17
Empower & Inspire: Understanding and Accelerating Research for Leigh Syndrome
Tuesday, September 17, 2024
Brought to you by:
​Cure Mito Foundation & integrative Cardiovascular Metabolism and Pathophysiology Laboratory (iCaMP) at Boston University
For details please visit curemito.org/conference

RITA Patient-Centered: Risk of Infection and Immunological Rare Diseases
2024-09-18 10:00 - 11:00 (America/Chicago)
Join the webinar “Risk of Infection and Immunological Rare Diseases,” featuring Dr. Laia Alsina, MD, PhD, Chief of the Clinical Immunology and Primary Immunodeficiencies Reference Unit at Hospital Sant Joan de Déu, Barcelona. This patient-centered webinar, organised by RITA, is part of a new series led by Education WG Chair Jordi Anton, alongside Savino Sciascia and RITA patient groups. Discover insights into the latest research and clinical practices for managing rare immunological conditions.

Rare Disease Day 2025 webinar: Enhancing Accessibility in Physical and Digital Spaces
2024-09-18 14:00 - 15:30 (Europe/Helsinki)
Join on 18 September at 2 pm (CEST, UTC+2) for our Rare Disease Day Webinar, “Enhancing Accessibility in Physical and Digital Spaces.” Discover innovative strategies for making environments more inclusive for people with rare diseases, featuring insights from accessibility experts and patient advocates. Don’t miss this opportunity to engage in meaningful discussions with speakers Adéla Odrihocká (Czechia), James Buller (UK), and Andre Felix (Belgium) on how we can create a more accessible world together.

IPNA Webinar: Chronic kidney disease care in low resource settings: Can we make it a smooth ride for children?
2024-09-19 10:00 - 11:30 (America/Denver)
The webinar will discuss the challenges and barriers to optimal pediatric CKD care in low-resource settings and invite experts to discuss potential solutions to address the inequities in care. The webinar will discuss patient and family perspectives and the need for support.

Webinar - Clinical trials across the lifespan: Considerations for trials with pregnant people and children
2024-09-19 12:00 - 13:00 (America/New_York)
Webinar objectives:
1. Identify reasons why more clinical trials should include children and pregnant people
2. Describe additional considerations for designing, operating, and communicating about clinical trials with pregnant people and children
3. Discuss opportunities and challenges for considering clinical trials across the life span with IMPaCT and PregTrials

'Clinical neurophysiology in dystonia' by Anke Snijders
2024-09-24 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).

Webinar - Designing effectiveness-implementation hybrid trials in child health research
2024-09-25 12:00 - 13:00 (America/New_York)

Turner syndrome and fertility options
2024-09-25 15:00 - 16:00 (America/Chicago)
Register now for a presentation by Professor Janielle van der Velden, paediatric endocrinologist, Radboudumc, Amalia Children’s Hospital, Nijmegen and expert in Turner syndrome.
Event chaired by MTG7 chair Hedi Claahsen, paediatric endocrinologist, Radboudumc, Amalia Children’s Hospital, Nijmegen

Autoimmune Encephalitis and Immune-mediated Epilepsies
2024-09-26 09:00 - 10:30 (America/Chicago)

The important elements of the Medicine Wheel" with Dr. Terri-Lynn Fox
2024-09-26 09:00 - 22:30 (America/Chicago)
This session will provide a brief overview of the medicine wheel, why it is important, and how it supports emotional, spiritual, mental, and physical health and healing. Led by Dr. Terri-Lynn Fox [Aai’piihkwikomotaakii], Indigenous Scholar on Indian Residential Schools and Truth and Reconciliation, this 75-minute session includes a presentation and will be followed by a discussion period where attendees can submit questions and comments on the topic. While we hope you can join the live webinar, it will be recorded and available on the Arthritis Community Learning Circle’s “Arthritis Call to Action” website following the presentation.

ERKNet/ESPN Webinar: "Ciliopathies" by Marijn Stokeman
2024-10-08 08:00 - 09:00 UTC

PxP Webinar 3 2024: Different opportunities to engage as a patient partner
2024-10-08 08:00 - 17:00 (America/Chicago)
The webinar series is all about patient engagement in health research, also known as patient and public involvement (UK) or consumer involvement (Australia). It is worth mentioning that ‘patient engagement’ in health research is distinctly different from signing up to be a research participant. Taking part in a study as a participant (for example trying a new treatment or management program) can be a great way to help advance healthcare, but the role would not generally include giving input into the research study itself.

Understanding the importance of the social determinants of health for children and youth with disabilities
2024-10-08 12:00 - 13:00 (America/Chicago)

ALS Canada Webinar: Medical Assistance in Dying (MAID) in Canada
2024-10-09 13:00 - 15:00 (America/New_York)

Stem Cell Therapies for Neuromuscular Disorders
2024-10-15 12:00 - 13:00 (America/Chicago)

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)

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.
