Strong member endorsement reflects the value of MSIF membership

A recent membership satisfaction survey has provided valuable insight into how members experience and engage with the MS International Federation (MSIF), highlighting both the strength of the global movement and opportunities to deepen collaboration in the years ahead.

The survey received responses from 33 member organisations across Europe, North America, South America, the Middle East, North Africa, Asia and Africa, representing a 67% of our membership. Members of all sizes took part, from volunteer-led organisations to highly staffed organisations.

Strong confidence in MSIF’s role and value

The findings show very positive perceptions of MSIF. All respondents agreed that MSIF membership provides good value to their organisation, while every member agreed that MSIF communicates relevant information clearly and promptly. All Members responded expressed strong confidence in MSIF as a credible representative of the global MS community.

This feedback reflects MSIF’s core role of bringing the global MS movement together to share knowledge, strengthen advocacy and drive collective action for people affected by MS worldwide.

Organisations expressed a high level of satisfaction with their membership experience, giving an average score of 9.12 out of 10 when asked how likely they would be to recommend MSIF membership to another MS organisation. This strong endorsement reflects the value members see being part of the global MS movement and their confidence in MSIF’s role in supporting, connecting and amplifying the work of MS organisations worldwide.

Members also demonstrated a strong understanding of MSIF’s purpose and direction. Over 96% said they were either very clear or somewhat clear about MSIF’s role, mission and strategic direction.

A highly engaged global membership

The survey highlighted the breadth of participation across MSIF’s programmes and activities over the past three years.

The most widely used opportunities included MSIF Expert Groups meetings, World MS Day activities, Global Networking Meetings and online Board meetings, and the Resource Hub. Members also reported benefiting from access and diagnosis initiatives and Atlas of MS.

key challenges

While engagement levels are high, members identified several barriers to becoming more involved.

The most common challenge was limited organisational time and resources. Language barriers, particularly a lack of English-speaking staff or volunteers, also affected participation for many organisations. Cost and distance associated with attending in-person meetings, along with time zone differences, were additional obstacles.

Importantly, the feedback suggests that members see these as capacity challenges rather than concerns about MSIF’s relevance. Many respondents indicated that they would like to contribute more if resources allowed.

Looking ahead

As MSIF begins thinking about its next strategic phase, members identified global advocacy as the highest priority area for future focus. In particular, respondents want MSIF to continue coordinating efforts to improve access to affordable diagnosis and treatment and ensure that MS is recognised within global and national health policies.

Members also placed high value on opportunities to learn from one another, share solutions, and generate evidence through initiatives such as the Atlas of MS to support members’ advocacy and planning.

Some respondents highlighted the need for stronger regional representation and inclusion in decision-making, alongside a greater role for MSIF in leading fundraising efforts for MS research and supporting international research collaboration and networks.

A movement built on collaboration

The survey results paint a positive picture of a connected, engaged and committed membership. Members continue to see MSIF as a trusted global partner and are willing to contribute their expertise, share resources and participate in collective action. Over half of respondents said they are willing to contribute staff or volunteer expertise, while many are keen to share tools, participate in global projects.

As one respondent noted, “We believe in the great strength of the MSIF movement.” That sentiment was echoed throughout the survey and serves as a powerful reminder that the federation’s greatest asset is its global network of members working together to improve the lives of people affected by MS.

Reflecting on the survey results, Mario Alberto Battaglia, Chair of the MSIF Board, said:

‘Our member organisations are the strength of MSIF. This survey shows that they value being part of a global movement that works together to improve the lives of people affected by MS. I am encouraged by the trust they have placed in MSIF and by their willingness to share their expertise, learn from one another and contribute to our common goals. As we develop our next strategy, their voices will guide our priorities and help ensure that together we continue to build a stronger global MS movement.’