QUINCY, Mass. Dec. 12, 2024 — The National Organization for Rare Disorders (NORD®) has named Tracey Sikora, Vice President of Research & Clinical Programs.
“One of the main hurdles in rare disease research is that much of the work is happening in sin ilos, disease by disease and institution by institution. I believe that by working to reduce these silos and by following the NORD model — a collaborative network-based approach for research and clinical care — we will be able to advance effective therapies and access to care for all rare disease patients.” says Sikora.
Founded in 1983 following the enactment of the Orphan Drug Act, NORD is the nation’s leading and longest-standing nonprofit organization working at the intersection of care, research, policy and community for all patients and families affected by rare diseases. NORD’s network of patient advocacy organizations includes more than 350 nonprofit members representing specific rare conditions.
“Tracey’s emphasis on strategy, dedication to patient-centered initiatives, and extensive experience with rare disease makes her a standout leader of NORD’s medical affairs team,” said Pamela Gavin, NORD Chief Executive Officer. “Her leadership will advance NORD’s longstanding efforts to facilitate collaboration among medical professionals and accelerate research to improve the health and wellbeing of the more than 30 million Americans living with a rare disease.”
Sikora began her career in 2009 as a research specialist at the University of Pennsylvania School of Veterinary Medicine. There, she executed studies in pre-clinical models of rare genetic disorders, as well as efficacy studies involving gene therapies and treatments for rare diseases.
From 2014-24, Sikora transitioned to the University of Pennsylvania School of Medicine where she served in multiple roles, including clinical research coordinator and associate director at the Department of Medical Clinical Trials Unit. At the Center of Cytokine Storm Treatment and Laboratory (CSTL), she led the CORONA project, a systematic evaluation of COVID-19 clinical trial results, clinical trials, and drug repurposing initiatives.
Sikora has made a significant impact in the clinical research, rare diseases, and most importantly, patient care space. She successfully led and managed multiple clinical trials, including a gene therapy trial, and collaborated with key industry opinion leaders during her time at the University of Pennsylvania. At Every Cure, she contributed to the organization’s strategy and mission, with a focus on impact, diversity, health equity, access to care, and clinical research. She also helped to establish, build, and lead the growth of the organization. Every Cure utilizes artificial intelligence and machine learning to identify and advance drug repurposing opportunities.
Sikora holds a Bachelor of Science degree from Cornell University.
To learn more about NORD and its leadership team, please visit: rarediseases.org/leadership.
