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

21st Biennial ESID Meeting
2024-10-16 08:00 - 2024-10-19 17:00 (Europe/Paris) | france, Marseille, France
The ESID 2024 meeting in Marseille will cover the latest most exciting discoveries in basic and clinical science covering our expanding field, bringing together internationally renowned scientists and clinicians to present and discuss major and exciting developments in diagnosis, clinical management, genetics, immunobiology of inborn errors of immunity, through keynote lectures, symposia, educational workshops, interactive sessions, poster presentations, and meet-the-expert sessions.

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.

EPNS Research Meeting 2024
2024-10-17 08:00 - 2024-10-18 17:00 (Europe/Helsinki)
The EPNS has been organising Research Meetings since 2008. With an aim to enhance research in Paediatric Neurology, the meeting brings together leaders in the field, active researchers and young fellows who are interested to join or to set up research projects. It is a forum for researchers in Paediatric Neurology, where they present their work, ideas, results, creating the possibility for good interaction between researchers and premises for networking, future collaborative research in Europe and beyond. Experienced professionals and young researchers get together, in an environment where interactive, vivid discussions can take place around the presented topics.

DIFFERENT FACES OF RARE AND COMPLEX EPILEPSIES
2024-10-17 08:00 - 2024-10-19 17:00 (Europe/Helsinki)

RQMO Educational Day 2024
2024-10-19 08:00 - 17:00 (America/Halifax)
The 2024 RQMO educational day will focus on a theme that affects many families who have a child with a rare disease:
The transition to adulthood of children with differences.

#ChildHealthCan2024
2024-10-20 08:00 - 2024-10-22 21:00 (America/St_Johns) | St.Johns, Newfoundland, 50 New Gower Street, St.Johns, Newfoundland, A1C 1J3, Canada
Children’s Healthcare Canada and co-hosts, the Janeway Children’s Hospital Foundation and NL Health Services, invite you to join us in picturesque Newfoundland and Labrador from October 20-22, at the St. John’s Convention Centre for their 2024 Annual Conference, Right-Sizing Health Systems for Kids: Navigating to Brighter Futures. For those unable to attend in person, a real-time virtual option will also be available.
Children’s Healthcare Canada is on a mission to Right-Size Child Healthcare Systems. In 2024, they will explore how to pave the way for brighter futures for children, youth, and families within the healthcare systems. Through the collective efforts of their members, strategic partners, and sponsors, they are dedicated to ensuring that all children and youth in Canada have access to the healthcare services they require in a timely manner.
We are thrilled to share that we will be hosting another conference in the Spring of 2025, giving attendees the opportunity to engage in two conferences within a six-month period!
Join us at our upcoming conferences in October 2024 and 2025 as they delve into the concept of right-sizing health systems. Together, they will discuss what it takes to establish a flexible and responsive system that meets the unique needs of children and youth, ultimately leading to improved outcomes for all.
Don’t miss the opportunity to contribute to the conversation on shaping a better future for the health and well-being of our youngest generation. They eagerly anticipate welcoming you to St. John’s, Newfoundland and Labrador, as we work towards a brighter tomorrow for our children and families.

World Orphan Drug Congress 2024
2024-10-22 10:00 - 2024-10-25 18:00 (Europe/Helsinki) | Fira de Barcelona Montjuic, Barcelona, Spain
The World Orphan Drug Congress is the largest, most established European meeting dedicated to orphan drugs. This year the conference will take place in Barcelona, Spain.
From cell & gene therapy, genetic testing, market access to real world evidence, this one meeting covers the whole orphan drugs value chain where science, government and manufacturers all come together to create groundbreaking progress.

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).

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.

Celebrating 15 Years of TACT: A Milestone Event in Boston
2024-10-31
This year marks the 15th anniversary of the TREAT-NMD Advisory committee for therapeutics (TACT). TACT was set up in 2009 by Prof. Volker Straub and Kate Bushby to provide the neuromuscular community with a unique drug development resource. The aim is to give transparent and consistent guidance to the neuromuscular research community in order to advance the treatment of neuromuscular diseases more effectively. Each year the committee meets in the spring and the autumn, and a bespoke panel is assembled to review up to four applications for advice from organisations developing treatments in NMD.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 ample opportunities to pose questions to the speakers, fostering meaningful dialogue and knowledge exchange.

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.

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+).

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

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.

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

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/

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

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.

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.

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