Bridging Science and Community

Evidence-based advocacy represents YOHRA's commitment to combining scientific rigor with community experience in our mission to improve rare disease outcomes. We believe that effective advocacy must be grounded in solid research while remaining deeply connected to patient experiences.

Our Scientific Advisory Committee works closely with medical professionals, researchers, and patient advocates to ensure that our initiatives are based on the latest scientific evidence. This committee coordinates research efforts, reviews medical accuracy, and guides innovation assessment, ensuring that our advocacy work is credible and impactful.

Through our Research Participation Initiatives, we engage young advocates in clinical trial awareness, patient registry development, and data collection. This unique approach not only advances scientific understanding but also helps bridge the gap between clinical research and community needs.

We're particularly focused on documenting patient experiences and treatment outcomes through our Data Collection and Analysis program. This systematic approach to gathering and analyzing information helps us identify trends, assess needs, and measure the impact of our interventions. By combining quantitative data with qualitative patient experiences, we create powerful advocacy tools that speak both to policymakers and to the hearts of community members.