February 21, 2024 – 7AM ET This webinar will provide an understanding of the importance of nutrition in ALS/MND. We will address nutritional changes upon diagnosis, considerations for bulbar onset […]
The Penn Frontotemporal Degeneration (FTD) Center is excited to open registration for our fourth annual familial conference, Uncovering the Genetics of FTD/ALS, on Wednesday, February 21st, 3:00PM to 6:00PM EST. Please register by visiting www.pennmedicine.org/FTDCFamilialConference2024. This event will take place virtually and the link will be provided once you've registered. Our […]
Dr. Ikjae Lee, from the Eleanor and Lou Gehrig ALS Center at Columbia University, will present a summary of literature on the intake of various macronutrients and their impact on […]
We are kicking off State of Play for 2024 with a look at how tech research can help people living with MND. MND Australia's Dr Ben O'Mara will talk about […]
This webinar will cover the essentials to understand respiratory support in ALS/MND. We will cover how breathing is affected, what care and support can be followed, non-invasive equipment available, […]
Moderated by Dr. Senda Ajroud-Driss, this webinar for both clinicians and people living with ALS will review the 3 drugs that are currently FDA-approved in the United States for the […]
This webinar will provide information on ALS/MND platform trials. We will hear from HEALEY, MAGNET and SMART. They will update us on their approach, recruitment, trial eligibility and their latest […]
Title: The role of multidisciplinary care in ALS Date/Time: Thursday, March 28, 2024 at noon CST Link to register: https://attendee.gotowebinar.com/register/7883989190684308310 About the Program: Join us for our March ALS Learning […]
Wednesday, April 3, 2024 | 3:00 - 4:00pm EDT Participate in our upcoming ALS Town Hall on April 3rd to hear how ALS scientists, advocates, innovators, and gene carriers have […]
Title: Navigating Advanced Directives Date/Time: Monday, April 15th at noon CST Registration link: https://attendee.gotowebinar.com/register/8687536477912516955 About the talk: Advanced directives are legal documents that provide instructions for medical care. When living with ALS, it is […]
This webinar will provide tools and recommendations for People living with ALS/MND, their caregivers and youth. We will learn how to take care of our mental health upon diagnosis, how […]
This webinar will cover the essentials to understand respiratory support in ALS/MND. We will cover how breathing is affected, what care and support can be followed, non-invasive equipment available, and […]
About the program: People living with ALS must make many complex decisions regarding their future care needs, which can be stressful and overwhelming. In our upcoming ALS Learning Series, with […]
DAY 1 | MEDICAL | Aetiology, Diagnosis and Genetics AUDIENCE | General Practitioners, Neurologists, Nursing fraternity and Allied health practitioners The Motor Neuron Disease Association of South Africa and Genoa Underwriting […]
About the Program What can you do to control your phone or tablet, when tapping on the screen becomes difficult? June's ALS Learning Series will describe in detail how to […]
DAY 2 | MANAGEMENT | Disease Progression Management AUDIENCE | All medical and allied medics involved in the treatment and management of MND patients The Motor Neuron Disease Association of […]
Every year the International Alliance of ALS/MND Associations celebrates 21 June as the global day of recognition of ALS/MND – a disease that affects people in every country of the […]
On June 21, ALS/MND Global Awareness Day, we’ll be holding a public webinar, moderated by our Chair, Calaneet Balas, to raise the profile of ALS/MND through the impact of the […]
DAY 3 | LAW AND ETHICS | Ethics AUDIENCE | Everyone The Motor Neuron Disease Association of South Africa and Genoa Underwriting Managers are delighted to invite you to a […]
Title: The RISE Initiative: Clinical Research, Inclusion, Support, and Education Link to register: https://us02web.zoom.us/webinar/register/WN_boRKwZHESzCc9X_KjWrY0A#/registration Join us for our July ALS Learning Series where Allison Bulat will discuss the Research Inclusion Support and […]
Date/Time: Thursday, August 29, 2024 at 12pm CST Title: Empower your voice: Navigating conversations with your ALS care team Registration Link: https://us02web.zoom.us/webinar/register/WN_9ZTnqnxhQZ6yIkLTNOZ8Wg About the Program: Join us for our August ALS Learning Series […]
Title: Open Enrollment Matters: Health Insurance Considerations for People Diagnosed with ALS Registration Link: https://us02web.zoom.us/webinar/register/WN_6A8UOAtqR2eiOF9RJUYz9A#/registration About the Program Open Enrollment is the time each year when consumers can sign up or […]
Join us for the NEALS webinar, "Feeding Tubes for People Living with ALS: What You Need to Know Before Getting One." Presenter Molly Spitz, RD, an ALS-focused registered dietitian from […]
Free ALS Caregiver Training Course, for at-home carers and health professionals, (in-person) in San Cataldo, Italy on Oct 7, 2024. Please see the graphic below for details.
Join us for the final installment in the "Advanced Respiratory Care in ALS" series as we delve into the complexities of respiratory failure in ALS. This session will focus on […]
2nd annual Italian Patient-Industry Networking Event with our partners, Oct 9th, in Milano, Italy. Free registration. It will focus on the necessary psychological support for persons living with […]
About the Program Join us for our October ALS Learning Series where Dr. Tavee will discuss complementary and alternative therapies for people living with ALS. These therapies can play a […]
This webinar will provide information on ALS/MND treatments currently in Clinical Trials. We will hear directly about timelines, where the sites are, other programs offered and who to contact if […]
The workshop will focus on motor neuron diseases, in particular ALS and SMA. This hybrid meeting will elucidate biological mechanisms involved in muscular atrophy (at different ages and conditions) and […]
About the Program Join us for our November ALS Learning Series about hope with Dr. Richard Bedlack. In this talk, Dr. Bedlack will review what he has learned about hope […]
The 2024 Alliance Meeting will be attended by 100+ delegates in-person and 100+ delegates virtually from over 40 countries around the globe that represent the Alliance’s many member associations. The meeting […]
The Allied Professionals Forum (APF) includes clinical care presentations for ALS/MND health and social care professionals. During the APF, practitioners from around the globe come together to share their practical knowledge […]
The International Symposium is the biggest annual conference dedicated to ALS and MND research. Each year we bring together researchers from around the world to share new understanding of amyotrophic […]
In this webinar, Drs. Andrews, Babu and Bedlack will explain what Expanded Access Programs (EAPs) are and how they differ from other pathways by which people living with ALS can […]
About the Program Every caregiver — and every caregiving journey — is unique, but there are some commonalities among caregivers of family members living with ALS. Most say caregiving is […]
In 2016, a "secret shopper" initiative was launched to assess the responsiveness of ALS clinical trial sites to patient inquiries. The findings revealed significant challenges in both the quality and […]
When you slide more or less quickly from independence to total physical and social dependence, you really need to have confidence in your environment and in society in order not […]
ALS/MND PLATFORM TRIALS UPDATE 19 March 8 am ET Registration: https://us02web.zoom.us/webinar/register/WN_GEOgomftSVOcV0woGWug4g#/registration We will have captions available This webinar will provide information on ALS/MND platform trials. We will hear from […]
About the Program In this talk Dr. Berry will discuss the aims, design considerations, and implementation of observational studies, highlighting the many ways observational studies hastened drug development and can […]
About the Program Join us for our April ALS Learning Series with Dr. Goutman, neurologist, from University of Michigan. Dr. Goutman will discuss research related to how environmental exposures influence […]
About the Program Understanding our gaps in knowledge about the social and structural determinants of health inequities in ALS is integral to making sure ALS becomes a livable disease. In […]
About the Program Join us for our May ALS Learning Series with Dr. Kelly Gwathmey from Virginia Commonwealth University. She will explore the causes and consequences of ALS diagnostic delay, […]
The upcoming ENCALS meeting will be hosted in Turin, Italy, from June 3-6, 2025. Satellite meetings will take place on Tuesday morning (June 3) and Friday (June 6). The program […]
Join ALS TDI and Her ALS Story (HAS) for the second of a 3-part collaborative Town Hall series, "Your Story. Our Science." Our journey continues with What Are Lesser-Known ALS […]
June 12 at 5:00 PM CEST Registration This session will explore how to strengthen the mental and emotional support you offer to the ALS community, with practical guidance on understanding […]
Date: June 26, 2025 at 4pm ET (3 CT) Title: Healey Platform Trial Updates & The Les Turner ALS Foundation Registration link: https://partners.zoom.us/webinar/register/WN_JW9rQBhTRFW5uoUIDtJguw#/registration About the Program: Join us for our June ALS Learning […]
July 1st at 5:00 PM CEST Registration This session focuses inward - on you and your team - offering space to reflect on the emotional demands of leadership and strategies […]
Join ALS TDI and Her ALS Story (HAS) for the third and final installment of our 3-part collaborative Town Hall series, "Your Story. Our Science." Our series concludes with How Can […]
About the Program Join us for a comprehensive review of current best practices and tools in Message Banking, Voice Banking, and Voice Cloning, including the role of Artificial Intelligence (AI) […]
Join us for a thoughtful and informative conversation with Dr. Robin Plumer and Jeremy Boal as we explore the topic of Medical Aid in Dying (MAID). Dr. Plumer will explain what MAID is, how individuals […]
About the Program: Join us for an informative session about how occupational therapy can support your daily activities and quality of life while living with ALS. Becca Schroeder, MOT, OTR/L, will […]
On behalf of the organising committee, it is with great pleasure that we invite you to join us at the PACTALS 2025 Conference, taking place from 7th to 9th September […]
About the Program ALS research depends on people living with ALS to join the National ALS Registry. Every individual’s story can contribute to our understanding of the disease, its causes, […]
2025 PACTALS INARC Session Date: Sept. 8 2025 Time: 4:30 PM - 6:00 PM Location: Melbourne, Australia Format: Roundtable Discussion For whom? INARC is a network dedicated to ALS clinical […]
About the Program Join us for an informative session focused on constipation management in people living with ALS. This webinar will explore the impact of constipation in this population, examine […]
Webinar 1: ‘Supporting your community’s mental wellbeing’ Date: October 2 Time: 5:00 PM CEST This session will explore how to strengthen the mental and emotional support you offer to the […]
Webinar 2: ‘Looking after your own mental wellbeing as an ALS community leader’ Date: October 9 Time: 5:00 PM CEST This session focuses inward - on you and your team […]
This webinar will take participants through an end-to-end demonstration of creating and using AI voice tools, highlighting the process from start to finish. The session will feature walkthroughs that illustrate […]
On Friday, October 17, 2025, from 10:00 - 4:00 p.m. ET, join the ALS community and ALS TDI for the ALS TDI Summit. The ALS TDI Summit is a free […]
About the program: Changes in functional mobility are common with ALS. This often may present as difficulty with transfers, need for a walking aide, possible wheelchair evaluation, and need for additional training with a […]
In this webinar, we will share the latest information on ALS/MND treatments currently in Phase 3 clinical trials. We will look at trial timelines, site locations, additional programs available, and key […]
Military Veterans are at increased risk of developing ALS. In 2008, the VA extended benefits to all Veterans with ALS who served greater than 90 days of active duty. Dr. […]
*This webinar was rescheduled from September. Join us for an informative session focused on constipation management in people living with ALS. This webinar will explore the impact of constipation in […]
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 […]
Are you ready to be part of something bigger? The Allied Professionals Forum (APF) brings together healthcare professionals from around the world, including physiotherapists, respiratory therapists, nutritionists, speech-language pathologists, social […]
In this presentation, Dr. Grouls will explore a concept people living with ALS know all too well: the financial burden of disease. She will trace the evolution of financial burden […]
The 2025 Patient Fellows will share their key learnings and experiences from participating in the 36th International Symposium on ALS/MND. Guided by the theme “Nothing About Us, Without Us,” this […]
Dr. Kara Bischoff will provide an introduction to palliative care and how it can be helpful to people with ALS and their loved ones. Aspects of advance care planning that […]
Hospice Care and ALS: What It Is, When to Consider It, and How It Supports You Join for our February ALS Learning series which will provide an overview of hospice […]
This webinar will feature an open conversation and testimonials about access to approved treatments for ALS/MND around the world. We will explore which therapies are approved in different countries and […]
Join us for a presentation of the headline findings from the third iteration of the ALS/MND Fundamental Rights Survey. This session will share key data and emerging trends on how […]
Exploring ALS Clinical Trials: What They Are, How to Find Them, and What Happens Next For many in the ALS community, clinical trials represent both hope and uncertainty. This educational […]
The Gift of Discovery: Tissue Donation and the Future of ALS Research Tissue donation is one of the most powerful contributions a person living with ALS can make to future […]
Event: Toward New Perspectives: From Diagnosis to Treatment of Voice Disorders (In Italian) Date: April 11, 2026 Time: 8:00 AM CEST Register here. Alcune patologie neurologiche e otorinolaringoiatriche possono causare […]
Your Care, Your Voice: Becoming an Active Partner in ALS Decision-Making Living with ALS means facing important decisions about your care - and your voice matters in every conversation. We'll […]
Informed Decision-Making in ALS: An Open Discussion on Tracheostomy and Invasive Mechanical Ventilation Join us for an open and honest conversation about one of the more challenging decisions people living […]
Understanding the FTD of an FTD/ALS Diagnosis Frontotemporal degeneration (FTD) and ALS are specific neurodegenerative disorders with different symptoms and underlying biology. As challenging as each can be on their […]
Platform trials are reshaping how new therapies are tested in ALS/MND. Join us for updates from leaders of EXPERTS-ALS, HEALEY, and SMART, who will share the latest on trial design, […]
A member forum exploring fundraising strategies, opportunities, and shared learning to strengthen organizational capacity. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
A member forum exploring fundraising strategies, opportunities, and shared learning to strengthen organizational capacity. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
Connected Through the ALS Journey: Support, Resources, and Community May 12 @ 2:00 pm - 3:30 pm EDT May 13 @ 2:00 pm - 3:30 pm EDT May 14 @ […]
A member forum focused on advocacy strategies, campaign development, government engagement, and approaches to securing funding. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
A member forum focused on advocacy strategies, campaign development, government engagement, and approaches to securing funding. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
Finding Your People: Real Stories of Community After an ALS Diagnosis An ALS diagnosis can change everything — but it doesn't mean navigating the road ahead alone. In this panel […]
A member forum examining workforce challenges affecting organizations and services across the ALS/MND community. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
A member forum examining workforce challenges affecting organizations and services across the ALS/MND community. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
A New Way to Measure What Matters Join us for an inspiring one-hour conversation with Peggy Plews-Ogan, MD, of the Hummingbird Fund, as she shares the story behind the ALS […]
Multidisciplinary care extends life and improves quality of life, yet clinic structures differ greatly across regions. This member roundtable will explore the key components of a baseline ALS/MND clinic model, […]
Les Turner ALS Foundation: ALS-FTD Clinicopathological OverlapTravel and exploration don’t need to stop with an ALS diagnosis. Join us for our July ALS Learning Series on travel. Kari Brouwer, Craig […]
A member forum discussing barriers, opportunities, and practical approaches to improving equitable access to ALS/MND care. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
A member forum discussing barriers, opportunities, and practical approaches to improving equitable access to ALS/MND care. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
Les Turner ALS Foundation: ALS-FTD Clinicopathological Overlap ALS and frontotemporal dementia (FTD) are increasingly understood to share underlying biological connections, and some people living with ALS may also experience changes […]
A member forum focused on health literacy and improving understanding, navigation, and access to information for people affected by ALS/MND. Registration note: Members only. To register or request more information, […]
Changes with eating and swallowing are common in ALS, and can feel overwhelming, but having the right information can make planning ahead easier. Join us for a practical conversation about […]
A member forum focused on health literacy and improving understanding, navigation, and access to information for people affected by ALS/MND. Registration note: Members only. To register or request more information, […]
Small tools can make a big difference in everyday life with ALS. Join us to learn about affordable products that can help with daily activities, where to find them, and […]
Join us on Wednesday September 23, at 1 pm ET for "Living and Loving with Loss: A Webinar on Navigating Grief While Living with ALS." A diagnosis of ALS brings […]
In this webinar, Marie Saxon, MS, CCC-SLP will review the most commonly observed cognitive and language symptoms in individuals with ALS and FTD, as well as their functional implications. Symptoms […]
A member forum exploring technology solutions that can support people living with ALS/MND (PALS) in daily life, communication, and independence. Registration note: Members only. To register or request more information, […]
A member forum exploring technology solutions that can support people living with ALS/MND (PALS) in daily life, communication, and independence. Registration note: Members only. To register or request more information, […]
This webinar will provide an overview of the rapidly evolving landscape of artificial intelligence. We will look at responsible and trustworthy AI, and the importance of governance as it relates […]
One of the biggest questions after an ALS diagnosis is, "What happens next?" This webinar will walk through common changes and the care decisions they may bring, helping you understand […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
Are you ready to be part of something bigger? The Allied Professionals Forum (APF) brings together healthcare professionals from around the world, including physiotherapists, respiratory therapists, nutritionists, speech-language pathologists, social […]
