Receiving a Multiple Sclerosis (MS) diagnosis or a related condition such as NMOSD or MOGAD at a young age can significantly change your life.
This change brings new realities and previously unrecognised needs related to work, education, social life, mental health, and relationships—challenges that often feel isolating and overwhelming to navigate. EMSP’s recent “Impact of Multiple Sclerosis Symptoms” survey reveals that over 40% of young people with MS report symptoms of depression, a rate notably higher than in older age groups. This finding not only highlights the emotional impact of receiving a diagnosis early in life but also underscores the critical importance of providing targeted mental health support. That is why incorporating the perspectives of young people into policy-making and research agendas is essential.
Their experiences and priorities are crucial to ensuring that policies and research efforts reflect the full spectrum of experiences within the MS community, leading to more inclusive, effective, and sustainable solutions. Young voices provide unique insights that can identify and address gaps in care and support that might otherwise be overlooked. EMSP has been working tirelessly to empower young voices within the MS community through its Young People’s Network initiative.
A 15-Year Journey of Youth Empowerment
The Young People’s Network (YPN) was launched by EMSP in 2010 with a clear mission: to empower young people with MS to advocate for their unique needs and build a supportive community. From the outset, the goal was to create a safe, inclusive space where young people feel understood and can share experiences and ideas for creating meaningful change.
Recognising the need for support for related neurological conditions like NMOSD and MOGAD—which are often misdiagnosed as Multiple Sclerosis—EMSP expanded its scope in 2023 to include advocacy and support for people with these related disorders.
Creating Opportunities for Advocacy
EMSP offers diverse opportunities for young patients to engage in advocacy, including dedicated youth side events during EMSP conferences, specialised youth projects, and the inclusion of a youth representative on our Executive Committee. This last initiative ensures young people have a voice at the highest level of organisational decision-making. The network creates valuable opportunities through various innovative initiatives.
Let’s Talk MS Podcast: Amplifying Young Voices
Let’s Talk MS Podcast, one of EMSP’s flagship project, features meaningful conversations between medical experts and young patients about topics most relevant to the youth community.
This platform serves as more than just an information source—it’s a space where we advocate for the needs of young people and openly share concerns, feelings, and experiences. These conversations blend clinical expertise with lived experience, going beyond symptoms and treatments to explore what it truly feels like to live with a chronic condition at a young age and navigate all the personal challenges that accompany it.
Topics range from mental health and relationships to career planning, facing uncertainty, and building resilience. While we acknowledge the real challenges young people face, we also celebrate their remarkable strength, creativity, and hope.
Ready to Make Your Voice Count?
Are you a young person aged 18–35 living with MS, NMOSD, or MOGAD? Join the Young People’s Network (YPN) to connect with others who understand your journey, share your experiences, and help shape the future of advocacy. Your perspective matters, and your voice can drive real change.
To learn more about our YPN initiatives, visit: https://emsp.org/projects/ypn/
To join YPN, contact our Membership and Community Engagement Coordinator, Anna Revilla Bruñol, at anna.revilla@emsp.org.
Blog courtesy of the European Multiple Sclerosis Platform, a Patient Community Day Supporting Partner.
