Connecting with the MSIF movement at ECTRIMS 2025

In attendance was Anne Helme - Head of Research & Access, Lili White – Senior Communication and Campaigns Officer, Lydia Makaroff – CEO, Kerry Huntington - Head of Fundraising & Engagement, Rachel King - Senior International Evidence Manager (Left to Right)

In September 2025, MSIF team members travelled to Barcelona to join 9,500 people at the world’s largest MS conference, ECTRIMS. 

Connecting with members 

Venue walk-through with MSIF members

We kicked the week off by hosting a venue walk-through for MSIF members that were attending the conference – including representatives from Österreichische Multiple Sklerose Gesellschaft – OEMSG (Austria), Associação Brasileira de Esclerose Múltipla – ABEM (Brazil), MS Society of New Zealand (MSNZ), and Esclerosis Múltiple Uruguay (EMUR).  

Later in the week MSIF and the National MS Society  (NMSS) in the USA co-hosted the first meeting of a new networking group bringing MS organisations together to exchange experiences on the services and programmes they provide for people with MS. Members from the Netherlands, Austria, Uruguay, South Africa, Brazil, Canada and the USA shared the diverse ways they support people with MS, from in-person rehabilitation and psychological support, to peer support programmes and digital platforms facilitated by their organisations. NMSs co-hosted the first meeting of a new networking group bringing MS organisations together to exchange experiences on the provision of MS programmes and services. Members from the Netherlands, Austria, Uruguay, South Africa, Brazil, Canada and the USA shared the diverse ways they support people with MS, from in-person rehabilitation and psychological support, to peer support programmes and digital platforms. 

Services and programmes meeting co-hosted with NMSS

Services and programmes discussion co-hosted by NMSS

Whilst in Barcelona, it was the perfect opportunity to spend time with colleagues from MSIF’s member Esclerosis Múltiple España (EME) in Spain. Lili White, MSIF’s Senior Communications and Campaigns Officer, visited La Fundación Esclerosis Múltiple (FEM), a member of EME in Barcelona.   

‘During my visit to FEM, I learned about how they support people affect by MS through an online community, as well as their major MS awareness campaign Mulla’t. It was particularly special to visit FEM’s dedicated employment centre – a space where people with MS and other disabilities can access employment support and meaningful work.’ Lili White, MSIF’s Senior Communications and Campaigns Officer

Lydia and Lili also attended the LinkEM dinner, part of the tenth national conference of EME. The event featured a special screening of ‘Hoy No Es Siempre’ — a moving film about the journey to accepting an MS diagnosis. The film follows the story of a designer navigating the challenges of her diagnosis, capturing her emotional journey with honesty and depth.  

Visit to FEM special employment centre

Panel discussion at LinkEM dinner

Research from MSIF member organisations

Many MSIF member organisations are active in MS research. Several of MSIF’s members funded research that was presented at ECTRIMS 2025, including FranceSEP, MS Australia, MS Society UK and the National MS Society in the USA. 

Other member organisations conduct research themselves. Dominika Czarnota-Szałkowska, CEO of Polskie Towarzystwo Stwardnienia Rozsianego (PTSR), MSIF’s member in Poland, presented research demonstrating that people with MS should be more engaged in treatment decisions and provided with more comprehensive information about their options. 

MSIF’s member in Brazil, Associação Brasileira de Esclerose Múltipla (ABEM), presented four posters. Led by Dr Marcelle Sanjuan, the research explored quality of life and treatment experiences for people living with MS in Brazil. ABEM’s research focuses on enhancing treatment access and strengthening patient support within the Brazilian healthcare system — an important contribution to improving care for people with MS.  

Patient Community Day 

This year, Patient Community Day was supported by 41 organisations, including MSIF and many of its members. It was a free online and onsite event for people with and affected by MS and related neurological conditions, and the recordings are available on the ECTRIMS website.  

Non Smitt, CEO of Multiple Sclerosis South Africa talked about the Patient Community Day, saying: 

 ‘It’s the first time that an African organisation has been invited to partner with ECTRIMS for Patient Day and we are so excited about that… I am blown over by the information, the new trends, the diagnosis updates and people talking about wellness and lifestyle, especially psychological and cognitive factors. It’s such important topics for people with MS.’ Non Smitt, CEO of Multiple Sclerosis South Africa 

This year, the Patient Community Day included a panel of people with lived experience, who were invited to talk about the importance of patient engagement in MS research. During the panel Graham Walker, Vice President at MS New Zealand and a person living with MS, talked about the value of his role helping to select MSIF’s research fellows as part of his role on MSIF’s McDonald Fellowship panel. Graham said;  

‘It’s been amazing for me to be able to read all those research documents and try and decide which ones are best suited for people with MS. It’s uplifting, it really is.’ Graham Walker, Vice President at MS New Zealand

Also on the panel, Eduard Pletea, President of Asociația Pacienților cu Afecțiuni Neurodegenerative (APAN) in Romania, shared a powerful reminder of the importance of involving people with MS at every stage of research, saying: 

‘Research about us should never be done without us. We as patients are experts by experience… My message is simple: invite us in from the very beginning.’ Eduard Pletea, President of Asociația Pacienților cu Afecțiuni Neurodegenerative (APAN) 

ECTRIMS 2025 was a special opportunity to connect with MSIF’s global network. Read more about the latest global research on MS diagnosis and treatment presented at ECTRIMS 2025 here. 

Graham Walker speaks at Patient Community Day

Patient Community Day