Tracey Sikora Takes Leadership at NORD to Enhance Rare Disease Research and Care

Tracey Sikora Takes Leadership at NORD

The National Organization for Rare Disorders (NORD) has made a significant move in the realm of rare disease research by appointing Tracey Sikora as their Vice President of Research & Clinical Programs. This strategic hire is viewed as a cornerstone in NORD's mission to enhance collaboration within their network of Rare Disease Centers of Excellence, ultimately aiming to accelerate the development of therapies and cures for over 10,000 rare diseases.

Tracey Sikora, based in Philadelphia, has made her mark in the field of rare disease by co-founding Every Cure, a nonprofit focused on advancing the repurposing of existing drugs for new medical applications. With 15 years of dedicated research experience, Sikora is uniquely qualified to oversee NORD's research and medical affairs, where she will bring together various stakeholders involved in rare disease research.

"One of the significant challenges in the rare disease space is the siloed nature of much of the research, often conducted on a disease-by-disease basis without adequate collaboration," Sikora stated. Her vision revolves around dismantling these barriers and fostering a collaborative network approach — a hallmark of NORD's operational model.

Founded in 1983, NORD stands as the foremost nonprofit entity dedicated to serving individuals affected by rare diseases. With a vast network of over 350 member organizations, NORD serves as a crucial bridge between patient advocacy, medical professionals, and policymakers. Pamela Gavin, NORD's CEO, underscored Sikora’s potential impact, stating, "Her rigorous focus on strategy and patient-oriented initiatives will propel our efforts to harness collaboration among medical practitioners, enhancing the health and wellness of millions."

Sikora's career began at the University of Pennsylvania School of Veterinary Medicine, where she managed pre-clinical research on rare genetic disorders. Her trajectory progressed to the School of Medicine, where she took on leadership roles in various clinical research projects, including trials for gene therapies and drug repurposing efforts during the COVID-19 pandemic.

At Every Cure, Sikora not only contributed to clinical research strategies but also advanced critical discussions around health equity and access to care – a theme she intends to carry forward within NORD. Emphasizing the importance of diversity and collaborative research, she stated, "Scholarly research must include patients' voices to facilitate meaningful advancements in care."

With a Bachelor of Science from Cornell University, Sikora's academic foundation and real-world experience equip her to tackle the challenges faced by those living with rare diseases. As NORD gears up for an era rich in potential advancements, the organization is optimistic about Sikora's leadership to propel their mission forward.

For further information on NORD and its leadership initiatives, visit rarediseases.org/leadership. NORD remains committed to championing the numerous individuals and families grappling with rare diseases across America, ensuring that everyone gains the equitable care they deserve.

This pivotal moment in NORD’s journey marks a commitment not only to research but to collective wellness for every rare disease patient across the nation. With Sikora at the helm of research and clinical programs, there is a renewed hope for accelerating the pace of innovation and improving patient outcomes in the realm of rare diseases.