One community. One mission. Patient Community Day unites patients, medical researchers, doctors, and patient advocacy groups from around the world with a common goal: to educate and empower people with MS and related neurological diseases.
First held in 2022, the event takes the cutting-edge research being shared during the annual ECTRIMS Congress, the world’s largest international conference dedicated to MS research, and explains what it really means to patients’ everyday lives.
This year, Patient Community Day will take place on 26 September, directly following the Congress in Barcelona, Spain. This event, hosted by The European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), is dedicated to improving the lives of people living with multiple sclerosis (MS), myelin oligodendrocyte glycoprotein antibody disease (MOGAD), and neuromyelitis optica spectrum disorder (NMOSD) all over the world. Together with the support of over 40 Supporting Partners and sponsors, the event aims to tear down silos, foster partnerships, and place patients at the very heart of scientific research
ECTRIMS President, Professor Bruno Stankoff, said, “Overall, the goal of ECTRIMS is to improve the lives of patients who are affected by demyelinating inflammatory diseases, such as MS. It is natural that patients are included in this journey. This is why, included now in this congress, we have developed this Patient Community Day.”
Engaging a global patient community
At Patient Community Day in 2024, more than 300 people attended the live in-person event, and almost 1,000 joined online. Organisers are expecting even more to get involved this year, both in person and virtually
More than thirty-five patient advocacy groups from all over the world have signed up as Supporting Partners, with nearly every continent represented.
A number of “watch parties” are also planned to enable more people to participate virtually in Ghana and New Zealand, with more expected to confirm in the coming months.
Brett Drummond, co-founder of MStranslate and host of the ECTRIMS podcast, will moderate this year’s Patient Community Day.
“In the past, the event has had great attendance from people in Europe and North America. But our goal is to make sure all people living with MS and related neurological conditions have access to all the information they need – no matter where in the world they live,” he said. “We have also listened to feedback from last year’s event and made a few adjustments that we hope will make the event even more engaging, educational, and empowering.”
An interactive programme for those with lived experience
Session One of the Patient Community Day Programme will follow the typical patient journey, discussing the latest research related to diagnosis, treatment, and everyday strategies for living with MS, MOGAD, or NMOSD. Researchers and specialist nurses will highlight these latest scientific advances that have just been presented at ECTRIMS 2025.
A new addition for 2025 is a panel of people with lived experience of the conditions, who will share their thoughts on the importance of Patient Community Day and why they believe engaging with research is so critical.
The day will also feature a midday networking session, to give in-person participants the opportunity to share experiences, ask questions of researchers and meet with representatives from Supporting Partner organisations from around the world.
At the same time, online audiences will be able to voice their burning questions in a live and exclusive “ask the expert” forum.
To round out the event, Session Two will look at some of the hot topics that emerged during the congress. Discussion will include topics like cognition, smouldering MS, and biomarkers – and other areas of particular interest to people living with MS.
More additions to the programme are expected as the team moves into the final stages of planning.
To keep up to date, join the Patient Community Day newsletter and visit the Patient Community Day website.
Register for Patient Community Day 2025
Blog courtesy of contributing writer, Amanda Barrell.