The European Multiple Sclerosis Platform’s Young People’s Network and Its Impact

Multiple Sclerosis (MS) is a prevalent neurological disorder causing disability in young adults. To address this, our society partners European Multiple Sclerosis Platform (EMSP) established the Young People’s Network (YPN) in 2010. The aim of the YPN is to empower young people with MS to actively participate in the European MS movement and have a significant voice in setting their own goals and priorities. It also provides a platform for young individuals to meet and develop strategies to tackle the specific challenges they face in their communities.

Young people in YPN advocate for the inclusion of youth in decision-making processes at national and European levels. They engage in EU-wide discussions, collaborate with national MS societies, and, supported by EMSP, participate in the European patients’ movement. This includes attending high-level meetings at the European Parliament, participating in public health events, and running impactful social media campaigns by sharing personal stories.

The YPN recently created a short video “Amplifying the voices of tomorrow!” in which young people share their experience of receiving an MS diagnosis, the challenges they have faced and their hopes for the future, including:

• • Empowering young people to become involved in decision-making during treatment planning.
  • Creating programmes targeted towards carers to help them support young people living with MS.
  • Encouraging decision makers to provide a centralized system that adapts to the needs of people with chronic conditions, helping them avoid feeling like a burden.
  • Addressing workplace challenges for people with chronic conditions by facilitating conversations between employers and patients to make the workplace more adaptable.
  • Encouraging MS organizations to work more closely with decision makers to improve the quality of life in the workplace.
  • Utilizing digital tools and technologies to give young people with MS better access to data and information.

 

Elisabeth Kasilingam, CEO at the European Multiple Sclerosis Platform commented:

“The European Multiple Sclerosis Platform (EMSP) launched a call to address the needs faced by people with MS in its pre-elections Manifesto. This is a call to policy decision-makers, health and social care professionals to work together with the patients and caregivers to help improve European health and social care systems for a better future” “From education to employment, social inclusion to access to healthcare, young people living with Multiple Sclerosis (MS) share their stories, highlighting challenge they face on their journey. They are raising their voices to advocate for change, for a better quality of lives and most importantly for equality. Their testimonies are only a sample of what the individual affected by chronic conditions such as MS or similar neurological conditions (NMOSD, MOGAD, etc.) face. There is an urgent need for systemic transformation of the social and health care systems across Europe.

During its Annual Conference, on 19 April 2024, EMSP launched an inspiring video featuring members from EMSP’s Young People’s Network, this video inspires action and solidarity. Join the movement by signing the One Million Minds Campaign petition. Together, we can make a difference.”

The people featured in the video describe an ideal world that is non-judgmental, empathetic and understanding of the challenges faced by people with MS. This includes promoting more flexible working and educational environments to enhance accessibility for individuals with MS, and developing an app to help patients monitor their condition more easily. Ultimately, the goal is to enable people with MS to live their lives free from the current burdens of the condition.

Find out more about the many ongoing projects organised by the EMSP.

Looking for more content on multiple sclerosis?

• Read the peer reviewed article What Fluid Biomarkers Tell Us at Different Stages of Multiple Sclerosis from touchREVIEWS in Neurology

• Watch Enrique Alvarez discuss ublituximab for participants with relapsing multiple sclerosis at AAN 2023.

Disclosures: This article was created by the touchNEUROLOGY team utilizing AI as an editorial tool (ChatGPT (GPT-4o) [Large language model]. https://chat.openai.com/chat.) The content was developed and edited by human editors. No funding was received in the publication of this article.