By Alicia Truelove, MSN, RN, CV-BC, NPD-BC
International Nurses Day, May 12, is a time to honor and celebrate the heart of healthcare: nurses. As a nurse of over 14 years, this day is more than a commemoration —it’s a heartfelt opportunity to honor the compassion and empathy we bring to our work, the unwavering advocacy we offer our patients, and the vital role our knowledge and skills play in making a difference in their lives. For those of us who work in the rare disease space, the responsibility feels even greater. We are often the first point of contact, the steady hand in the storm, and sometimes, the only affirmation from a clinician that the condition isn’t “all in your head.”
Rare diseases, by definition, are unfamiliar to most. There are over 10,000 known rare disorders, each affecting a small percentage of the population, but together they impact over 300 million people globally. Behind each diagnosis — or lack thereof — is a patient and a family navigating a confusing and often isolating journey. In many ways, we nurses become the bridge between these patients and the care they desperately need.
I still remember the day I became a person living with a rare disorder. How vulnerable and isolated I felt as I navigated this new normal. You see, I’d never heard of this condition before, and the deeper I dove into research, the quicker I realized there were limited answers to finding relief. That experience changed me as a nurse. It made me realize that the lack of knowledge of rare disease in nursing was an injustice to the people we care for. It also showed me how critical our role is — not just in delivering care, but in seeking out answers, coordinating support, and empowering patients through information.
One of the most powerful tools in my journey has been access to free resources and training through the National Organization for Rare Disorders (NORD). NORD’s commitment to people navigating the rare disease space has been invaluable. Their robust Patient Assistance Programs and valuable evidence-based resources have helped me connect with others living rare to find much-needed support and understand my condition further. More importantly, they’ve equipped me with the tools to ask better questions, make informed referrals, and offer emotional and educational support to people living with rare and undiagnosed disorders.
Another game-changing resource is the Global Nursing Network for Rare and Undiagnosed Disorders (GNNRD). This global community has opened up a space for collaboration, shared learning, and solidarity. Through webinars, discussion boards, and educational modules, I’ve connected with nurses around the world who face similar challenges. Whether it’s a nurse in Australia working with a child living with Batten disease or a nurse in Kenya supporting a family through a diagnostic odyssey, these connections remind me that we are not alone. GNNRD gives us a platform to not only learn from each other, but to advocate for systemic change in rare disease care across borders.
What we do as nurses in the rare disease space often goes unseen. We translate complicated scientific evidence into plain language. We advocate for coverage of life-saving therapies. We comfort families during long diagnostic odysseys, and we celebrate every small milestone — sometimes just getting a name for the condition is a victory. We do all of this while navigating the emotional weight of caring for those who are suffering.
To me, Nurses Day isn’t just a celebration; it’s a reminder of how far the nursing profession has come and how far we still have to go. It’s a call to support nurses in all corners of the globe with the training, resources, and respect we deserve—especially those working in the under recognized field of rare disease care.
To my fellow nurses: if you’ve ever felt overwhelmed by the complexity of rare disease in any capacity, know that you’re not alone. There are resources like NORD and GNNRD that can support you every step of the way, including with accredited rare disease Continuing Medical Education (CME) programming. Don’t hesitate to reach out, ask questions, or to share your experiences. After all, you might just be the lifeline for someone else in our community. And to patients and families, thank you for entrusting us with the honor of caring for you. Thank you for teaching us about resilience, courage, and the strength of the human spirit. You inspire us to be better every day.
This International Nurses Day, it’s my honor to acknowledge all nurses — but especially those navigating the uncharted waters of rare disease. We are the connectors, the caregivers, the constant in a world full of unknowns. Together, with the right tools and support, we can continue to bridge the gap between diagnosis and hope.
Alicia Truelove, MSN, RN, CV-BC, NPD-BC, is a Registered Nurse, a volunteer with the Global Nursing Network for Rare and Undiagnosed Disorders (GNNRD), and one of two volunteer State Ambassadors for NORD’s California Rare Action Network. To learn more about the NORD Rare Action Network and get involved in your state as a health care professional, patient, or caregiver, visit RareAction.org.