Pamela Gavin was recently named NORD’s new CEO, following Peter L. Saltonstall’s retirement. After serving as a volunteer, Pam joined NORD in 2012 as its first Chief Operating Officer and most recently served as Executive Vice President. Pam becomes NORD’s third CEO in the organization’s 41-year history. See full press release HERE.
Her fierce approach to patient advocacy combined with her visionary thinking and healthcare background has driven many of NORD’s groundbreaking initiatives over the last decade. To help the rare disease community get to know Pam, we asked her four questions.
Unfortunately, I have experienced firsthand the devastation of a child’s life gone too soon from a rare disease. My nephew Trevor was diagnosed at age two and died at the age of nine from metachromatic leukodystrophy, a rare and debilitating genetic disorder that impacts the brain and nervous system. NORD was an important source of support and information for our family.
No one should endure the heartache, isolation, and endless hurdles that come with a rare disease diagnosis. This experience combined with those of millions of others with rare diseases is what drives me to fight tirelessly for those affected by rare disease.
I’d like the community to understand the depth of my commitment to addressing the immense challenges they face daily. From increasing resources for individuals and families, to assisting patient advocacy groups, to faster drug development, improved access, and accelerated research, to making rare disease a priority for our elected officials – I am dedicated to driving change at every level.
I’d also like the community to know that everyone at NORD, along with our 340-member organizations, is working vigorously every day on their behalf. The challenges our community face are immense and complex. Nonetheless, I’m ready to take them on and be a collaborative partner in solving them.
From a young age I found the human mind and body fascinating and had an interest in healthcare. In college, I set out to go to medical school and instead found myself a biology major gravitating to the positive impact technology could have on the quality of healthcare available to patients. I learned through various experiences and training that as amazing as humans are, humans make mistakes even when having the best of intentions. I got involved in healthcare safety to help clinicians and patients have better experiences and improved outcomes.
As such, I’m a big proponent of using technology whenever possible to help us make more informed decisions to improve people’s health. From the diagnostic journey to uncovering treatments, technology is crucial. I’m enthusiastic about its evolving role in addressing the challenges we face, including its role in patient registries, improving our healthcare infrastructure, and addressing manufacturing processes to capitalize on the promise of cell and gene therapy and other evolving therapeutics for rare diseases.
Family is everything. I enjoy spending time cooking (and eating!) with my immediate and extended family and embracing the sights, sounds and smells of where I live by the ocean on Cape Cod. A perfect day for me is combining family time with sailing or indulging in my love for classic cars by taking in a car show or enjoying a walk and the ocean breeze with my dog Georgie.
One in 10 Americans lives with rare disease, many of whom fight a daily battle to access the care and support they need. Your gift to the National Organization for Rare Disorders (NORD®) funds life-changing programs and helps us advance policies and research to ensure that everyone gets the care they need AND deserve.