MS Patient Community Day draws record attendance from 89 nations

A few months ago in Barcelona, at the annual conference of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), thousands of participants from dozens of countries convened for Patient Community Day 2025 (PCD). This annual event brings together researchers focused on multiple sclerosis (MS) and associated demyelinating diseases, alongside people living with these conditions.

According to the newly released ECTRIMS 2025 PCD impact report, more than 3,500 people registered for the event, with a total of 2,383 people from 89 countries actually attending the late September event. That’s nearly twice as many attendees as there were just last year, and nearly four times as many as there were at the first PCD event in 2022.

“This year, our priority was ensuring that scientific knowledge reaches people living with these conditions in every corner of the world,” Bruno Stankoff, ECTRIMS president, said in a press release from ECTRIMS detailing the report’s findings.

According to the report, “this scale is not just a milestone. It is evidence of a growing global demand for trustworthy, understandable, and patient-centred science.”

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The report adds that this year’s increased involvement also “signals a long-term shift: Patients are no longer passive recipients of information; they are partners, leaders, and drivers of research and care.”

Also involved in PCD 2025 were more than 40 different supporting organizations — more than double the number of groups that were involved last year. These organizations represent more than a dozen countries worldwide, and for the first time this year, there was one group from Africa (MS South Africa).

PCD 2025 at ECTRIMS: ‘A year of record-breaking growth’

The report called 2025 “a year of record-breaking growth” for the event, noting a 264% increase in the number of registered participants since the first PCD just three years ago.

“PCD 2025 marked the most significant expansion to date,” the report states. “These numbers tell a story of acceleration: more engagement, more inclusion, more global reach, and more investment in patient-centred innovation.”

For the neurologists and other clinicians in the room, it’s important they hear … insights [from people living with MS]. When they go back to their hospitals and offices, they can think about different things they have heard, and how they can use that to build better services and research.

For the first time, this year’s PCD featured a panel of people with MS discussing their lived experiences. Roxy Murray, who lives with MS and is the founder of Multiple Sclerosis Fashionista, a PCD supporting partner, said the new feature was one she “absolutely loved.”

“Our voice also needs to be heard,” Murray said, adding that “patients love to hear from other patients.”

“And for the neurologists and other clinicians in the room, it’s important they hear those insights. When they go back to their hospitals and offices, they can think about different things they have heard, and how they can use that to build better services and research,” Murray said.

The PCD also featured Q&As and discussions on a wide range of topics, including artificial intelligence, genetics, and vaccines. More than 500 questions and comments were shared online, according to ECTRIMS.

Surveys from attendees showed that more than 90% rated their experience as either “good” or “excellent,” with 95% of respondents stating that the content shared was meaningful and relevant to them. The majority of respondents said they learned something new that they plan to discuss further with their healthcare providers, and almost all respondents said they hope to come back again for PCD 2026.