Chronically The Patient Empowerment Newsletter
Roi Shternin
This Rare Disease Day, I want to shift the focus from access to therapies and specialist care, which are undeniably crucial, to something rarely discussed: the profound social and emotional challenges faced by the rare disease community.
While securing access to treatment is a constant struggle, it's often overshadowed by the loneliness, social isolation, and lack of understanding we encounter daily. We, the "rare" patients, are often met with disbelief, misdiagnosis, and even gaslighting from the very systems designed to help us.
But amidst the friction lies resilience. Many of us, despite the constant fight, have turned our struggles into a powerful force for empowerment. We connect with others facing similar challenges, offering support and building a community where understanding thrives. This strength, however, comes at a cost – a cost of navigating an often-unfriendly system for years just to receive a diagnosis, access treatment, and secure basic healthcare coverage.
This Rare Disease Day, I urge us to remember that these experiences aren't unique to the "rare" community. Millions living with conditions like POTS, ME/CFS, fibromyalgia, and endometriosis face similar struggles.
It's time to break the paradigm. It's time to stop viewing anything outside the "medical mainstream" as a zebra amongst horses. Every individual seeking healthcare deserves to be treated as a whole human being, with dignity, empathy, and compassion.
Let's not just advocate for access to treatment and expertise but for a fundamental shift in perspective. Let's create a healthcare system that acknowledges the emotional and social needs of every patient, regardless of the "rarity" of their condition.
Chronically spearheads a healthcare revolution, championing patient engagement and empowerment as cornerstones for change in the pharmaceutical industry. Led by Roi Shternin—whose journey from medical enigma to healthcare innovator embodies the transformative power of patient-centric advocacy—our consultancy offers targeted workshops and strategic guidance. We equip healthcare organizations with the tools to embrace uncertainty, understand patient perspectives, and foster a resilient culture of collaboration and respect. Our mission is to elevate patient outcomes and streamline healthcare costs by establishing trust and fostering patient-centered care at the heart of every policy and practice.