As genetics becomes increasingly relevant in ALS/MND care and research, important questions are emerging around access, consent, privacy, equity, and support. This member roundtable will examine what rights should guide policy and practice in the genetics era, and how the global community can respond. Group discussion (two options to accommodate time zones): Group 1: […]
The Access for ALL in ALS (ALL ALS) Consortium is a nationwide, NIH-funded clinical research initiative in the United States that collects and shares biological samples and clinical data to accelerate amyotrophic lateral sclerosis (ALS) research. Aeryn Hopwood and Emma Schmidt of the Les Turner ALS Center at Northwestern Medicine will discuss the structure of the study […]
Hospice is often surrounded by fear and misconceptions, yet it can be one of the most valuable sources of support during the ALS journey. Join us for an honest discussion about what hospice care looks like in ALS, what to expect from referral through end of life, and how to make the most of the […]
In recognition of National Family Caregivers Month, join us for a special three-part webinar series exploring the family side of the ALS journey. ALS impacts not only the person living with the disease, but also the caregivers, children, and loved ones who walk alongside them. Through conversations on caregiver wellbeing, family relationships, finding joy together, […]
In recognition of National Family Caregivers Month, join us for a special three-part webinar series exploring the family side of the ALS journey. ALS impacts not only the person living with the disease, but also the caregivers, children, and loved ones who walk alongside them. Through conversations on caregiver wellbeing, family relationships, finding joy together, […]
This webinar will provide an update on ALS/MND treatments currently in Phase 3 clinical trials. Participants will learn about trial timelines, study locations, available programs, and key contacts for further information. The session will offer an overview of the current Phase 3 clinical trial landscape and the latest developments in treatment research. Register now
In recognition of National Family Caregivers Month, join us for a special three-part webinar series exploring the family side of the ALS journey. ALS impacts not only the person living with the disease, but also the caregivers, children, and loved ones who walk alongside them. Through conversations on caregiver wellbeing, family relationships, finding joy together, […]
The fourth edition of Motor Neuron Diseases brings together researchers and clinicians to share advances in understanding motor neuron diseases, including disease mechanisms and emerging therapeutic approaches. The event is organized by the Neuroscience Institute Cavalieri Ottolenghi (NICO) and the Department of Neuroscience – University of Turin in Italy. It is being offered virtually and in […]
The conSLAncio ETS Association, founded by Andrea Zicchieri, member of the International Alliance of ALS/MND Associations, EUpALS (European Organization for Professionals and People with ALS), the EU ALS Coalition, and the Italian ALS Coalition, is proud to announce the Hybrid Conference "Motor Neuron Diseases IV Edition Workshop: Understanding the Pathogenetic Mechanisms to Develop Therapies", 6-7 […]
A member forum examining how artificial intelligence may impact people living with ALS/MND, care delivery, research, and support services. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
A member forum examining how artificial intelligence may impact people living with ALS/MND, care delivery, research, and support services. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
Palliative Horizons is a one-day education session from the Canadian Society of Palliative Medicine (CSPM) on palliative care for people living with ALS/MND and Parkinson's disease. It is for palliative medicine physicians and other clinicians working in neuropalliative care. The session takes place in Richmond, British Columbia, and online. Recordings are available to all registrants […]
Our Annual Meeting will be taking place virtually. This meeting will provide an opportunity to reflect on achievements and discuss priorities for the coming year. Additional details will be shared closer to the date. Please mark your calendars and plan to attend.
The Alliance Meeting is the place where member associations can meet and share experiences in growing, running and building an ALS/MND association to support people living with ALS/MND. The meeting is attended by 200+ delegates from over 40 countries around the globe, either in-person or virtually, that represent the Alliance’s many member associations. (Open to […]