Mackenzie Abramson | Patient Advocate & Sr. Manager of Research Program Communications
Global Genes

I am a dedicated advocate for rare and chronic disease patients, driven by my personal journey and commitment to amplifying the voices of patients, caregivers, and advocacy groups. Diagnosed in my mid-20’s with my first rare disease, I pursued advanced education to bridge the gap between public health initiatives and rare disease, honing my skills in self-advocacy while navigating the complexities of my own diagnostic journey. My advocacy efforts have since spanned years and reached an international scale, involving active participation and public speaking at key events with organizations such as Global Genes, NORD, the EDS Society, NIH Rare Disease Day, and more. Currently, I am the Senior Manager of Research Profram Communications at Global Genes where I support community and research engagement efforts through the RARE-X Research Program, as well as all research initiatives with the aim of growth through patient and researcher community engagement and recruitment. Additionally, my personal work focuses on rare diseases, chronic illnesses, mental health, and women’s health, while partnering with the healthcare, pharmaceutical, and biotech industries to creat meaningful change. Drawing on my experience in research program communications, public health programming, and patient operations, I specialize in bridging the gap between patient communities and industry stakeholders, ensuring that patient needs and insights are at the forefront of research, development, and care initiatives. I am committed to empowering patients, transforming the way their voices shape the future of healthcare, and enhancing patient engagement through new partnerships. By sharing my story and insights, I hope to inspire others to navigate their healthcare challenges with confidence and resilience.