Patients and Families at the Heart of PROMOT Research
- ameliefournier4
- Apr 23
- 2 min read
In the PROMOT Network, we believe that the most impactful research begins with listening—and that means putting the voices of patients and their families at the center of everything we do.
Too often in traditional research models, people living with rare diseases are viewed solely as participants or subjects. PROMOT is changing that narrative. Here, patients and family members are respected as equal partners, working alongside researchers and clinicians to co-design research that is grounded in lived experience and driven by real-world needs.
Co-Designing Research with Purpose
Our research partners—individuals living with neuromuscular diseases and their family members—play an active role in setting research priorities, shaping project design, and contributing to strategy and decision-making at every level. Their insights are not just helpful; they are essential.
By sharing their day-to-day realities, challenges, and hopes, they help researchers better understand the full impact of rare neuromuscular diseases. This ensures that the questions we ask, the outcomes we measure, and the interventions we test are not just scientifically valid—but meaningful and relevant to the people who matter most.
Driving Innovation Through Collaboration
Our patient and family partners are deeply involved in the research process, from the early conceptual stages all the way to implementation and knowledge sharing. They help us identify gaps, spot unintended consequences, and ensure that our research remains focused on improving quality of life, health outcomes, and access to care.
This collaborative model is more than just inclusive—it’s innovative. By integrating lived experience with clinical and scientific expertise, we’re fostering a new kind of research culture—one that is more responsive, human-centered, and ultimately more effective.
Discover the People Behind the Progress
We invite you to learn more about the individuals who are helping shape PROMOT’s mission. Our patient and family partners come from diverse backgrounds and bring a wealth of insight, resilience, and motivation to this work. Discover why they chose to join the PROMOT Network, what inspires their involvement, and the changes they hope to see in rare disease research and care.
