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 to international developments in research and future therapies.
My personal journey into patient advocacy began through my daughter’s diagnosis. Like many parents in the rare disease community, I started with questions and uncertainty, trying to understand a complex condition and its medical, genetic, and practical implications. Over time, this experience grew into a broader responsibility to help other families access clearer, more trustworthy information.
Completing the EUPATI Patient Expert Programme was a key step in this path. The training helped me gain structured knowledge about clinical trials, regulatory processes, ethics, HTA, and evidence-based communication. This has strengthened my ability to share accurate, well-explained information with the Greek Rett community and to represent the needs of families with greater confidence and clarity.
One of the areas where this knowledge has been especially valuable is the promotion of rettX, the European patient registry for Rett syndrome. In Greece, registries are often unfamiliar to families, so our efforts focus on explaining—in simple and transparent terms—why data contributes to natural history studies and future clinical trials. Through social media posts, updates, and direct communication with families, we highlight how participation supports research and strengthens the voice of the community. Our approach is gradual, respectful, and fully aligned with ethical principles of patient involvement.
Another important part of our work is staying informed about developments in gene therapy and RNA-based research. With programs such as NGN-401 progressing into advanced clinical stages, families naturally have many questions. Our role is to provide balanced, evidence-based information without creating unrealistic expectations. Using the tools learned through EUPATI, I focus on explaining trial phases, safety considerations, timelines, and what is known—and not yet known—about emerging therapies. This helps families navigate scientific updates with clarity rather than anxiety.
Awareness activities also play a significant role in our mission. Each October, during Rett Syndrome Awareness Month, we collaborate with municipalities in Greece to illuminate public buildings in purple and share educational materials. These events not only inform the wider public but also give families a sense of visibility and community.
As a small association, international collaboration is essential. We stay connected with the European Rett community, follow scientific updates closely, and participate in discussions that help bring best practices into Greece. My EUPATI background has strengthened these connections by giving me a deeper understanding of how patient involvement contributes to research and policy.
Looking ahead, our priorities remain clear:
Supporting scientific literacy for Greek families so they can make informed decisions.
Encouraging participation in rettX, as registries are essential for future research.
Advocating for equitable access to innovative therapies, ensuring families in Greece are informed and prepared as the scientific landscape evolves.
EUPATI has shown me how structured knowledge can transform personal experience into credible, responsible patient advocacy. For our community, this means better understanding, stronger connections, and a clearer voice in shaping the future of Rett syndrome care and research in Greece.
