Valuing Experience and Enriching Connection

09 Dec 2025 Stroke support

At the World Stroke Congress in Barcelona in October, the World Stroke Organisation and Bayer partnered in hosting a pre-Congress reception. Valuing Experience and Enriching Connection was the theme of the lived experience and stroke support organization (SSO) panel event.

Moderated by Stacie Broek, a speaker, author, and public advocate, the panel event aimed to:

Elevate stroke survivor voices: Showcase the value of lived experience in shaping stroke care and secondary stroke prevention.

Recognise partnership: Position stroke survivors and support organizations as equal partners in research, policy, and service delivery.

Spark dialogue: Facilitate a meaningful exchange between stroke survivors, support organizations, clinicians, researchers and industry.

Strengthen collaboration: Explore how partnerships, including with Bayer, can advance prevention, education, and long-term support.

Stacie relearned to write after a stroke at age 46. A former marketing professional, Stacie uses her platform to challenge conventional views of life after stroke. She believes that care should begin with what’s meaningful to the individual. Stacie sees life after stroke not as a return to the past, but as a journey of meaningful action and transformation.

Stacie was joined on the panel by Richard Djan-Krofa, Javier Martin, Claudia Trujillo, and Esther Duarte.

Richard had an ischaemic stroke at 36, in May 2008, affecting the left side of his brain. It caused temporary paralysis, speech-loss, right-side weakness, and aphasia. Refusing to be defined by stroke, Richard embraced resilience and purpose, actively supporting stroke and aphasia charities and community initiatives. Richard is a trustee for Different Strokes, a UK charity empowering working-age stroke survivors and families to rebuild lives through peer support.

Javier is a passionate stroke recovery advocate who embraces the ‘second chance at life’. He collaborates with Freno al Ictus, the Spanish SSO, sharing personal testimony to support fellow individuals with lived experience and their families, aiming to ease their journey through awareness and empathy.

Claudia is a social worker and Head of Inclusion Projects at the Freno al Ictus, leading programs that promote holistic support and social reintegration for stroke survivors. Claudia is a professor at the Oberta University of Catalonia, dedicated to shaping the next generation of professionals in the social field.

Esther is a Specialist in Physical Medicine and Rehabilitation, former Head of Department at Hospital del Mar, and Professor at Pompeu Fabra University. She is author of numerous articles published in leading scientific journals. Esther has been the Director of Fundacio Ictus in Barcelona since 2024, dedicated to advancing stroke rehabilitation and research into brain recovery, patient support, and innovative rehabilitation technologies.

During the discussion, Richard shared what his experience of accessing support was like. Javier suffered three strokes, each one happening soon after the other. Javier told the audience how this had affected his life.

Esther highlighted the need for psychosocial support for stroke survivors and the need for greater support for those living outside of cities. Esther said ‘Fundació Ictus aims to raise awareness among the population about the risk factors for stroke and to recognize the warning signs in order to ensure rapid referral to the hospital. The Foundation participates in various research projects in which patients are true partners, taking on dissemination tasks. The involvement of stroke survivors and their caregivers is absolutely essential when deciding what results we intend to achieve in a research project. We organize continuing education courses for professionals. But our flagship program is a free support program for patients and caregivers, the ABRIC program, which identifies unmet needs and addresses them. Life after a stroke, following the period of acute and subacute healthcare, involves various needs: it is at this moment that organizations like ours become crucial’.

Claudia talked about where she felt survivor voices are currently being heard in stroke care and where are they still missing, ‘I want to emphasize that simply listening is not enough: the voices of survivors must truly influence clinical decisions, health policies, and how we support recovery, so that our interventions genuinely benefit patients. When their experiences are incorporated from the outset, we gain a better understanding of what works, what causes pain, what helps, and what is lacking. That's why I insist that we shouldn't limit ourselves to a purely professional perspective; we must create space for stroke survivors to show us what we sometimes overlook. Only then can we design interventions that address their real needs and support their recovery process more comprehensively and respectfully’.

The reception was well received by participants – who also particularly enjoyed the photo booth which promoted Bayer’s secondary prevention campaign. The format of the event was praised – described as engaging and interactive. Audience engagement was high – the session generated visible interest and positive follow-up during the networking time. The event set a positive tone for the rest of the World Stroke Congress and was seen as a meaningful opening event.

The collaboration between Bayer, WSO, and the Lived Experience Experts and SSOs was felt by those involved to be genuine and inclusive – a model which all believed should continue and expand in the future.

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