I joined the EUPATI Fellowship following the recommendation of Neurofibromatosis Patient United (NFPU), the European umbrella organization for neurofibromatosis associations. They believed this program would equip me with essential tools to grow as a patient advocate, and they supported my participation through a funded fellowship. What motivated me most was the opportunity to truly understand how the healthcare system works — from clinical trials to regulatory pathways — and how patients can actively contribute to these processes.
The EUPATI Fellowship was intense and demanding, requiring deep study and reflection. It profoundly changed the way I see healthcare, particularly the development of medicines and treatments. I became increasingly aware of how often patient perspectives are undervalued in highly technical environments dominated by clinicians, researchers, and industry stakeholders. Yet it is patients who live with treatments daily, experience side effects, and can meaningfully describe whether an intervention improves real life or not. This realization strengthened my commitment to advocacy but also made me aware of the responsibility that comes with staying informed and engaged.
After completing the fellowship, I felt a strong need to translate this knowledge into action. As someone living with neurofibromatosis and multiple sclerosis, and as a psychologist, I wanted to create something that could address gaps I experience personally and observe professionally. This led to the creation of Raposinha em Movimento, a social impact initiative based in Braga, Portugal, that brings together psychology, movement, and inclusion.
Raposinha em Movimento was born from two main gaps in the system: the lack of humanized responses to the daily challenges of people living with chronic illness, and the way limited health literacy fuels stigma, prejudice, and invisibility. Through this project, I aim to promote psychological well-being, empower individuals, and challenge societal narratives around chronic conditions. Movement and sport are central to this mission, not as performance goals, but as tools for resilience, inclusion, and self-efficacy.
At this stage, the project is in an early incubation phase. I am exploring collaborations with local institutions and organizations to understand how Raposinha em Movimento can grow sustainably. Alongside this, I already provide psychological support and am developing pilot ideas such as workshops in schools or social centers and accessible physical activity initiatives. Although this path requires significant effort with limited immediate return, I feel I am building something meaningful. I have also begun connecting with like-minded professionals, opening space for future collaboration.
By sharing this initiative with the EUPATI community, I hope to inspire other fellows and foster connections. I strongly believe that when patients are given tools, knowledge, and opportunities, they can create impactful initiatives and play a fundamental role in health promotion. I would welcome opportunities to collaborate, exchange ideas, and continue learning together — because patient voices do not end at advocacy; they can also lead change.