Sophia Zilber

WORK HISTORY

ABOUT SOPHIA ZILBER

I\'m blending my purpose, passion, and professional expertise through my work, advocacy, writing, and speaking. I have more than twenty years of experience in statistical programming and data analysis, and I am deeply passionate about using data to make a meaningful impact in the lives of patients with rare diseases. Currently, I hold the position of Associate Director of Statistical Programming at Alexion Pharmaceuticals. In this role, I lead a dedicated team of programmers and analysts, ensuring the delivery of high-quality data and analysis for clinical trials and regulatory submissions, adhering to CDISC and industry standards.I view adversity as an opportunity to develop resilience and grow and strive to embrace this approach in my own life.Beyond my professional role, I am profoundly committed to the rare disease community. As a board member and patient registry director at Cure Mito Foundation, I oversee the Leigh syndrome patient registry. This registry gathers and analyzes patient-reported data to drive research and advocacy efforts. I\'ve been honored to share my insights at conferences, through peer-reviewed papers, educational resources and posters on data sharing, patient registries, meaningful patient engagement in research, and amplifying the patient voice.I have developed a self-paced course on developing a patient registry for patient advocacy groups. Please find the course here: https://sophiazilber.gumroad.com/l/registriesI shared my personal story in the blogs posted by Courageous Parents Network, KevinMD blog, American Academy of Pediatrics newsletter, and other media outlets. I am always eager to connect with like-minded individuals and explore potential collaborations. If you share my vision and passion, feel free to reach out to me.