Drawing on nearly 3,000 survey responses and direct testimony, the report identifies urgent unmet needs in diagnosis, symptom relief, and treating disease progression

NEW YORK, May 27, 2026 /PRNewswire/ — The National MS Society has announced the release of its Voice of the Patient Report, the most comprehensive document outlining the personal experiences of patients living with multiple sclerosis (MS). The report highlights the real-world impact of MS, the challenges of current therapies, and the priorities that should guide future research and innovation. The Voice of the Patient Report is the product of the Shaping Tomorrow Together externally-led patient-focused drug development (EL-PFDD) initiative, led by the National MS Society alongside the Accelerated Cure Project and partner MS organizations, in parallel with the U.S. Food and Drug Administration’s patient-focused drug development (PFDD) program. 

The report captures the MS community’s lived experiences, unmet needs and treatment priorities as they were identified at the meeting, from those who attended in person or virtually and the 2,892 individuals and carepartners who participated in a survey that was also a part of the initiative.

“For 80 years, the National MS Society has been working for the 1 million Americans affected by multiple sclerosis and their families,” said Dr. Tim Coetzee, President and CEO, National MS Society. “The science behind MS might happen in labs, but the truth about this illness – what it takes away from people, what they need most, and where our research still falls short – exists in the experiences of the individuals who wake up with it every day. We hope that this report helps elevate their voice to help to shape future treatments and ongoing research.” 

Key findings from the survey highlighted in the report include:

• Fatigue, walking, spasticity, cognitive function and bladder control ranked as the five symptoms respondents reported they would like better treatments for.
• 42% of survey respondents experienced a worsening of existing MS symptoms in the past year entirely unrelated to a relapse 
• 65% of respondents report having stopped at least one disease-modifying therapy, most commonly because their MS worsened, side effects were intolerable, or their doctor recommended stopping 

The report highlights the needs which MS community members shared at the meeting with the FDA, including the steady progress in expanding treatment options. They also identified urgent unmet needs for:

• Earlier diagnosis 
• Greater symptomatic relief 
• Effective treatment of disease progression 
• Therapies to repair demyelination and restore lost function 

Participants highlighted aspirations for more personalized treatments and management approaches to enhance quality of life and extend productive lifespan.

Five themes came up consistently and are highlighted throughout the report:

• Diagnosis of MS lags behind disease onset 
• ­Symptoms present in different patterns, degrees of severity, and intensity levels
• Decisions about disease-modifying therapies (DMTs) involve complex trade-offs
• ­DMT-related decisions can shift across life stages
• ­Progression can occur with or without relapses, even in individuals considered to be “well-managed”

The full Voice of the Patient Report, including an executive summary, patient quotes and complete survey data, is available at nationalmssociety.org/voiceofthepatient. 

About Multiple Sclerosis

Multiple sclerosis is an unpredictable disease of the central nervous system. Currently there is no cure. Symptoms vary from person to person and may include disabling fatigue, mobility challenges, cognitive changes, and vision issues. An estimated 1 million people live with MS in the United States. Early diagnosis and treatment are critical to minimize disability. Significant progress is being made to achieve a world free of MS.

About the National Multiple Sclerosis Society

The National MS Society, founded in 1946, is the global leader of a growing movement dedicated to creating a world free of MS. The Society funds cutting-edge research for a cure, drives change through advocacy and provides programs and services to help people affected by MS live their best lives. Connect to learn more and get involved: nationalmssociety.org, Facebook, X, Instagram, YouTube or 1-800-344-4867.

View original content to download multimedia:https://www.prnewswire.com/news-releases/national-ms-society-releases-voice-of-the-patient-report-capturing-the-lived-reality-of-multiple-sclerosis-302782506.html

SOURCE National Multiple Sclerosis Society