ERKNet Webinar: "Streptococcus pneumoniae-HUS" by Nicole vande Kar
2025-01-28 08:00 - 09:00 (America/Chicago)

Building Bridges: Essential Supports for Children with Disabilities and Their Families in Schools, Healthcare, and Community
2025-01-29 11:00 - 12:00 (America/New_York)
What do children with disabilities and their families need to thrive? A team of researchers, mothers, and children and youth with disabilities set out to answer this question by exploring their experiences during the COVID-19 pandemic and beyond. Their mission? To uncover what supports and services — spanning healthcare, education, and community life — families need now and in the future.

Update on Guillain-Barré Syndrome Guidelines
2025-01-30 16:00 - 17:00 (Europe/Paris)

Research Grant Announcement 2024
2025-01-30 18:30 - 19:30 (America/New_York)

Neuromuscular Mystery Case Rounds
2025-02-04 19:00 - 20:00 (America/New_York)
Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) are pleased to invite you to Neuromuscular Mystery Case Rounds. This case-based rounds webinar is for Canadian clinicians, academics, 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.

PxP 2025 Webinar Series. The patient perspective: Barriers and facilitators to patient partnership in research
2025-02-05 17:30 - 19:00 (America/New_York)
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.

Diagnosis and Treatment of Nodopathies
2025-02-06 16:00 - 17:00 (Europe/Paris)

Rare Disease Expertise, Centers & Networks: Results of the Public Survey
2025-02-12 14:00 - 15:00 (Europe/Paris)
This is a Public Webinar presenting the results of RDI Survey on rare disease expertise, care-providing centers and networks. This survey aimed to map the global landscape of rare disease expertise, identifying centers, networks, and collaborations dedicated to improving care for people living with rare diseases.
During the webinar, they will share key findings and insights from the survey, providing an overview of the current landscape in rare disease care across different regions and countries.

Multifocal motor neuropathy (MMN): diagnosis, treatment and update on biomarkers
2025-02-13 16:00 - 17:00 (Europe/Paris)

Electrodiagnostic Patterns in Immune-Mediated Neuropathies
2025-02-20 16:00 - 17:00 UTC

CAPA Webinar Physical Activity in Arthritis
2025-02-22 16:00 - 17:00 (America/New_York)

The Undiagnosed Hackathon: Driving Diagnosis Through Global Collaboration
2025-02-26 11:00 - 12:30 (America/New_York)

From Grassroots to Global: Growing Momentum Towards a WHA Resolution on Rare Diseases
2025-02-27 08:00 - 17:00 (Europe/Paris)
Join RDI for a webinar on the global movement behind the efforts to advocate for a WHA Resolution on Rare Diseases

Rare Moments: Virtual Storytelling Evening
2025-02-27 19:00 - 21:00 (America/New_York)
Don’t miss Rare Moments: Virtual Storytelling Evening
📅 February 27 @ 7:00 p.m. ET
Register: https://bit.ly/4ht5Ox9
It will be an inspiring evening of storytelling as families from across #Canada come together to share their experiences living with Duchenne #musculardystrophy.

CORD Rare Disease Day 2025 Webinar
2025-02-28 12:00 - 13:00 (America/New_York)
CORD is hosting a special webinar on Friday, Feb 28 from 12-1pm EST so that everyone from across Canada can tune in and help put that funding to work. Here’s what they’ll discuss: – Ending the diagnostic odyssey with CHEO’s ThinkRare – Treating and tracking rare diseases at BC Cancer – Caring for complex kids and adults at BC Children’s Hospital – The challenge of treating adults with SMA in Manitoba – Measuring the socioeconomic impact of rare diseases on families and health systems

Celebrate Rare Disease Day: Advancing Clinical Trials Together
2025-02-28 12:00 - 13:30 (Europe/Paris)
On February 28th, in recognition of Rare Disease Day, the European project DREAMS (www.dreamshorizon.eu) invites you to a thought-provoking online webinar: “Clinical Trials in Focus: Innovations and Patient Perspectives in Rare Diseases”. Join leading experts as they explore advancements in clinical trial methodologies, outcome measures, and lessons learned from research in muscular disorders.

Thriving with Duchenne
2025-02-28 13:00 - 14:00 (America/Denver)

RQMO 2025 International Rare Disease Day
2025-03-01 10:00 - 17:00 (America/New_York)
To celebrate International Rare Disease Day, the RQMO is organizing an activity on March 1, 2025 at the Sandman Hotel located at 999, rue de Sérigny in Longueuil.
The event will take place from 10 a.m. to 3 p.m. and will be followed by a networking cocktail from 3 p.m. to 5 p.m.
The activity will be presented in hybrid, you will have the possibility to attend in person or by zoom.

Webinar - Initiating Clinical Trials in Canada
2025-03-05 12:00 - 13:00 (America/New_York)

ALS Clinical Trials Unboxed
2025-03-06 13:00 - 14:00 (America/Denver)
Join ALS Canada, on March 6 at 1:00 pm ET, for ALS Clinical Trials Unboxed. In this webinar, Dr. Lauren Kett, Medical Director of Clinical Development at Amylyx Pharmaceuticals will present on the Phase 1 LUMINA study, an investigational antisense oligonucleotide (ASO) targeting calpain-2 for the potential treatment of ALS.

Navigating the Transition from Pediatric to Adult Neuroimmunology Care
2025-03-06 14:00 - 15:00 (America/New_York)
This webinar will provide an overview of the transition from pediatric to adult medical care, featuring insights from a pediatric neurologist, social worker, and a neuropsychologist.
Topics will include maintaining continuity of care, managing complex medical conditions, self-advocacy in healthcare settings, and addressing social and emotional considerations. The discussion aims to support patients, families, and caregivers in navigating this important transition effectively.

Empowering Patients 2025: A Cell and Gene Therapies Summit
2025-03-12 08:00 - 2025-03-13 17:00 (America/Denver)
This free, virtual event in two half-day sessions offers educational discussions for foundation leaders, patients, and caregivers to better understand #GeneTherapy and #CellTherapy.

NMOSD in sub-Saharan Africa
2025-03-17 18:00 - 19:30 (Europe/Paris)
The experts will provide insights and answer questions about the prevalence and incidence of NMOSD, diagnostics, available treatments, immunizations, clinical trials, and more. Patients, caregivers, clinicians, researchers, and advocates from around the world are invited to attend.
Live participants will have the opportunity to ask questions directly to the experts. The webinar will be recorded and made available for replay on TSF’s YouTube channel.

Webinar on “Neurogeriatric Aspects of Huntington’s Disease and Chorea”
2025-03-18 15:00 - 16:00 (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).

Peripheral Nerve Imaging with Focus on Inflammatory Neuropathies
2025-03-20 16:00 - 17:00 (Europe/Paris)

Save-The-Date: RareKids-CAN Virtual Information Session
2025-03-24 08:00 - 11:00 (America/New_York)
During this information session, you will gain an overview of RareKids-CAN, build connections within the community, and more!

AIHA Awareness Day 2025
2025-03-25 07:00 - 15:00 (America/New_York)
AIHA Awareness Day 2025 brings together patients, care partners, physicians, researchers, industry leaders, and legislators for virtual presentations that honor and support the journeys of those affected by Autoimmune Hemolytic Anemia and other Acquired Hemolytic Anemias. This day is a powerful call to action to inspire us all to champion hope, understanding, and awareness.

Dragon Claw Friends Webinar - Breaking Down Barriers – Are Patients Aware of Their Autoimmune Disease Treatment Options?
2025-03-27 10:00 - 11:00 UTC
Despite significant advancements in the treatment of autoimmune diseases, many patients remain unaware of their options. Social media platforms are filled with stories of people struggling with uncontrolled symptoms—so why aren’t these breakthroughs reaching those who need them most? To explore this issue, Dragon Claw Charity Australia, in collaboration with CaPPRe, has conducted research into the awareness gap among patients with rheumatology, dermatology, and gastroenterology-related autoimmune diseases.

Navigating Life with Dysimmune and Inflammatory Neuropathies: Q&A Session on Quality of Life and Management
2025-03-27 16:00 - 17:00 (Europe/Paris)

Understanding what matters to children and families: The socioeconomic impact of childhood arthritis
2025-03-31 08:30 - 09:30 (America/New_York)
This presentation will share findings from the Health Economics research lead by
Dr. Marshall as part of the international UCAN CAN-DU and CURE research program
on childhood arthritis.
