MS Brain Health

🤔 What do people affected by MS think about using AI in research and healthcare? Members of the Global PROMS Initiative have recently published on this topic - just one of the many activities carried out by our Engagement Coordination Team of people affected by #MultipleSclerosis! In this publication, we consider: 🔸 How can MS research benefit from applying AI to patient-reported data? 🔸 How could AI be used to improve an individual’s care? 🔸 What are the challenges and ethical considerations? 🔸 How can we guard against unintended consequences? Read more ➡️ https://lnkd.in/e2WMVQUq 👏 With thanks to all the authors: Dipak Kalra, Giampaolo Brichetto, Guy Peryer, patrick vermersch, Helga Weiland, Angela White, Paola Zaratin 🧡 Would you like to be part of an initiative that puts people affected by MS at its heart? Watch the video to find out more: https://lnkd.in/eWXbJYZ4 ❗ Apply to join the PROMS Engagement Coordination Team! ➡️ https://lnkd.in/e9mpsfHR

Elisabeth Kasilingam, CEO at European Multiple Sclerosis Platform (EMSP), highlights the usefulness of the ‘Brain health – time matters’ policy report to support regional and national healthcare and patient advocacy, and the importance of achieving "one voice", formed of many stakeholders, to help bring about much needed advances for people living with #MS, #NMOSD and #MOGAD. You can hear more from Elisabeth and other speakers as they share highlights and perspectives of our “Brain health – time matters” 2024 policy report at: https://lnkd.in/eDavWAg Report authors: Helmut Butzkueven, Gavin Giovannoni, Sofia Arkelsten, Kathy Costello, Michael Devlin, Jelena Drulovic, Emma Gray, Jodi Haartsen, Anne Helme, Jana Hlaváčová, Elisabeth Kasilingam, Yaou Liu, Thomas Mathew, Saul Reyes, Jérôme de Sèze and Mitzi Joi Williams M.D., FAAN #BrainHealthTM #BrainHealth #MSTimeMatters, #NMOSDTimeMatters, #MOGADTimeMatters, #MSBH #OHPF, The Sumaira Foundation, Sumaira Ahmed, EMSP - European Multiple Sclerosis Platform, MS International Federation (MSIF), Can Do MS

🌍 Preventing #MultipleSclerosis is a hot topic in the research community. I look forward to the opportunity to share some global perspectives at the EMSP - European Multiple Sclerosis Platform Annual Conference in May. 🗣️ Join me and my experienced co-Panellists for some insightful discussion! ▶️ Find out more: https://lnkd.in/e7TMUN3Y

Mitzi Joi Williams M.D., FAAN highlights that a holistic care approach for people diagnosed with #MS, #NMOSD and #MOGAD improves their health outcomes. You can hear more from Mitzi and other speakers as they share highlights and perspectives of our “Brain health – time matters” 2024 policy report at: https://lnkd.in/eDavWAg Helmut Butzkueven, Gavin Giovannoni, Sofia Arkelsten, Kathy Costello, Michael Devlin, Jelena Drulovic, Emma Gray, Jodi Haartsen, Anne Helme, Jana Hlaváčová, Elisabeth Kasilingam, Yaou Liu, Thomas Mathew, Saul Reyes, Jérôme de Sèze and Mitzi Joi Williams M.D., FAAN #BrainHealthTM #BrainHealth #MSTimeMatters, #NMOSDTimeMatters, #MOGADTimeMatters, #MSBH #OHPF, The Sumaira Foundation, Sumaira Ahmed, EMSP - European Multiple Sclerosis Platform, MS International Federation (MSIF), Can Do MS

📢 Calling all people with #MultipleSclerosis! 🌏 Wherever you live in the world, we want to hear from you! The Global PROMS Initiative wants to know your experiences and expectations about using digital tools to monitor your symptoms. Results from this global survey will help ensure digital tools meet your needs, and improve MS research and healthcare. 👇🏻 Find out more below 📝Access the survey: https://lnkd.in/ey2VyiUT

Professor Helmut Butzkueven speaks about the welcome expansion of scope, to include discussion and recommendations to improve treatment and care for those diagnosed with NMOSD and MOGAD, alongside MS, in our “Brain health – time matters” 2024 policy report. Hear his remarks from the report launch event and browse other resources at: https://lnkd.in/eDavWAg Gavin Giovannoni, Sofia Arkelsten, Kathy Costello, Michael Devlin, Jelena Drulovic, Emma Gray, Jodi Haartsen, Anne Helme, Jana Hlaváčová, Elisabeth Kasilingam, Yaou Liu, Thomas Mathew, Saul Reyes, Jérôme de Sèze and Mitzi Joi Williams M.D., FAAN #BrainHealthTM #BrainHealth #MSTimeMatters, #NMOSDTimeMatters, #MOGADTimeMatters, #MSBH #OHPF, The Sumaira Foundation, Sumaira Ahmed, EMSP - European Multiple Sclerosis Platform, MS International Federation (MSIF), Can Do MS

📢 Recommendations for essential medicines for #MultipleSclerosis in low-resource settings have been published by an international, multi-disciplinary panel, supported by the MS International Federation (MSIF). The panel not only considered evidence for how safe and effective the different treatments were, it also considered a broad set of criteria such as the feasibility of using different DMTs in low resource settings. These recommendations will be an important advocacy tool for anyone wanting to improve access to MS treatments. The process was supported by the Cochrane Review Group Multiple Sclerosis and Rare Diseases of the CNS, who led the research work and McMaster University GRADE Centre, who took the methodological lead. ➡️ Read more about these new recommendations: https://lnkd.in/dXyFE_-D 👏 With thanks to all the authors who spent many many hours discussing and writing about this topic, including: Nick Rijke, Jennifer McDonell, Joanna Laurson-Doube, Jagannadha Avasarala, Elisa Baldin, Tapas Kumar Banerjee, Riley Bove, Kathy Costello, najoua abkari, Matteo Foschi, Marien González Lorenzo, Dina Jacobs, Tomas Kalincik, Aukje Mantel-Teeuwisse, Carlos Navas, Francesco Nonino, Bianca Özcan, Andrea Prato, Dr Ben Ridley, Dilraj Sokhi, Tony Traboulsee, Maya Zeineddine, Holger Schünemann, Thomas Piggott and many others.

MSIF is delighted to announce Lydia E Makaroff, PhD as its new CEO. 📣🎉 Lydia is public health leader, working to improve healthcare systems through the power of global collaboration. She was previously the Chief Executive of Fight Bladder Cancer, and President of the World Bladder Cancer Patient Coalition. 👏 Read Lydia’s message to the global MS community, as MSIF continues to work towards our shared vision of a world without MS. 👉 https://lnkd.in/dx22TJDe

Have you read the new ‘Brain health – time matters’ report? https://lnkd.in/eDavWAg The "Brain Health – Time Matters" report focuses on the latest advancements in MS, NMOSD and MOGAD. It underscores the need for early and effective diagnosis and treatment to improve outcomes for individuals with these chronic conditions. The report also advocates for policy changes to better support patients and their families. By including rare neuroimmune conditions, it aims to drive global improvements in care. The panel of co-authors and subject-matter experts, including Sumaira and Michael Devlin from TSF, encourages readers to explore the findings and embrace opportunities for meaningful change. Oxford Health Policy Forum

Dr. Anne Helme highlights the importance of sharing knowledge and experience across related health communities to drive forward the change needed to improve treatment and care for those diagnosed with #MS, #NMOSD and #MOGAD. Hear the full panel discussion from the launch of our ‘Brain health – time matters 2024’ policy report and view the resources at: https://lnkd.in/eDavWAg Helmut Butzkueven, Gavin Giovannoni, Sofia Arkelsten, Kathy Costello, Michael Devlin, Jelena Drulovic, Emma Gray, Jodi Haartsen, Anne Helme, Jana Hlaváčová, Elisabeth Kasilingam, Yaou Liu, Thomas Mathew, Saul Reyes, Jérôme de Sèze and Mitzi Joi Williams M.D., FAAN #BrainHealthTM #BrainHealth #MSTimeMatters, #NMOSDTimeMatters, #MOGADTimeMatters, #MSBH #OHPF, The Sumaira Foundation, Sumaira Ahmed, EMSP - European Multiple Sclerosis Platform, MS International Federation (MSIF), Can Do MS