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X-WR-CALDESC:Events for International Alliance of ALS/MND Associations
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UID:18278-1741964400-1741982400@www.als-mnd.org
SUMMARY:International Colloquium with WÄERTVOLLT LIEWEIN: Personal Assistance
DESCRIPTION: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 to lose the will to live. Where does your personal life begin to be ‘worth living’ or ‘no longer worth living’? What happens then to trust in politics? \nWäertvollt Liewen is committed to ensuring that people with serious illness and/or disability have the opportunity to decide how and where they want to live their lives. This is in line with Article 19 of the Convention on the Rights of Persons with Disabilities (CRPD) (Living independently and being included in the community) and Article 15 (6) of the Luxembourg Constitution (Every disabled person has the right to equal enjoyment of all rights). \nThe ‘Action Plan for the Implementation of the CRPD 2019-2024’ ended on 31 December 2024. What went well and what needs to be improved? In the new Action Plan\, self-determination\, personal assistance and personal budgets should be declared the main goal. Their Implementation will enable people to live together in dignity and inclusion\, including the most needy among the disabled. \nClick here to download the conference registration form in English. \nProgramme from March 13\, 2025\n14.00 – 14.30 Reception of the participants\n14.30 – 15.10 Welcome speech by Wäertvollt Liewen \nAddress by Max Hahn\, Minister for Family Affairs\, Solidarity\, Living Together and Reception of Refugees \nAddress by Martine Deprez\, Minister for Health and Social Security \nAdress by Corinne Cahen\, Alderwoman for Integration of people with special needs\, Luxembourg-City \n15.10 – 17.10 Presentations\n17.30 – 18.00 Break\n18.00 – 18.40 Presentations\n18.40 – 19.10 Interviews\n19.10 – 20.00 Round table discussion\, questions and conclusions \nAfter the round table discussion\, Wäertvollt Liewen invites the participants to a cosy and well-deserved ‘Walking Dinner’ with musical accompaniment by Guilhem ‘Pone’ Gallart. \nAttend in person or online. Simultaneous translation provided in English\, French and German. Register by February 28\, 2025. 
URL:https://www.als-mnd.org/event/international-colloquium-with-waertvollt-liewein-personal-assistance/
LOCATION:Neumünster Abbey\, Centre Culturel de Rencontre Abbaye de Neumünster\, 28 Rue Münster\, 2160 Grund Luxembourg\, Luxembourg
CATEGORIES:Conference
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DTSTART;TZID=America/Toronto:20250319T080000
DTEND;TZID=America/Toronto:20250319T090000
DTSTAMP:20261011T013024
CREATED:20250220T162114Z
LAST-MODIFIED:20250220T162114Z
UID:18273-1742371200-1742374800@www.als-mnd.org
SUMMARY:Webinar from the International Alliance: ALS/MND Platform Trials Update
DESCRIPTION:ALS/MND PLATFORM TRIALS UPDATE\n \n19 March 8 am ET\nRegistration: https://us02web.zoom.us/webinar/register/WN_GEOgomftSVOcV0woGWug4g#/registration\nWe will have captions available\n \nThis webinar will provide information on ALS/MND platform trials. We will hear from HEALEY\, EXPERTS ALS and SMART. They will update us on their approach\, recruitment\, trial eligibility and their latest news.
URL:https://www.als-mnd.org/event/webinar-from-the-international-alliance-als-mnd-platform-trials-update/
LOCATION:Online
CATEGORIES:Webinar
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250331T130000
DTEND;TZID=America/Toronto:20250331T140000
DTSTAMP:20261011T013024
CREATED:20250303T131846Z
LAST-MODIFIED:20250303T131846Z
UID:18299-1743426000-1743429600@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: Observational Studies Help in the Quest for Effective ALS Therapies
DESCRIPTION:About the Program \nIn 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 create resources that aid the ALS community in the present and for years to come. \nAbout the Speaker \nDr. Berry leads the Massachusetts General Hospital Division of ALS and Motor Neuron Diseases. He is an active clinician and ALS clinical researcher\, with a focus on biomarker development and ALS clinical trial methodology. He oversees a large biorepository\, collecting\, storing and sharing blood\, DNA\, and spinal fluid and accompanying patient information\, which allows researchers around the globe to conduct critical research identifying biomarkers of ALS and developing novel therapeutics. He also leads projects developing digital endpoints for ALS trials that will help increase the objective data for trials while decreasing the burden on trial participants. Finally\, he is deeply committed to developing novel therapeutics by translating discoveries in the lab into clinical trials and leading clinical trials that will transform our approach to care in ALS. \nDr. Berry also oversees and leads out the clinic at the Healey Center for ALS\, caring for patients and helping to build and lead the multidisciplinary care team. He helped found the Telemedicine for People with ALS (TelePALS) program\, the ALS House Call Program and the Parenting at a Challenging Time (PACT) programs within the clinic. \nThe Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation\, Mitsubishi Tanabe Pharma America\, & Biogen for sponsoring this webinar. \nLink to register
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-observational-studies-help-in-the-quest-for-effective-als-therapies/
LOCATION:Online
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
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