Reverse Rett Greece is a small, parent-led association supporting families of individuals with Rett syndrome across the country. In Greece, rare disease support remains limited, and many families navigate diagnosis, daily challenges, and medical decisions with little guidance. Our goal as an organization is to provide reliable information, emotional support, and awareness, while helping families stay connected…

As someone living with chronic pain from fibromyalgia and endometriosis, I enter advocacy because suffering of invisible diseases taught me how absurdly difficult it is to talk about pain at all. Not just in clinical settings, but in everyday life, with friends, colleagues, partners, even at events supposedly designed to discuss it. Speaking about chronic pain often feels like…

When I first entered the world of advocacy I never imaged that my journey would lead to discussions with regulators, global advisory committees and policymakers, shaping the future of healthcare and academia. Like many advocates my starting point was deeply personal: a lived experience that demanded change. Personal motivation can become powerful professional expertise if…