Tag Archive for: patient engagement

A table is covered with a large sheet of white paper featuring hand-drawn, decorative letters spelling out the words: One Retinoblastoma World 2024. The words are outlined in various colours and patterns, and the letters are intricately designed with stripes, flowers, polka dots, and googly eyes. On the table, a container holds colorful markers; sheets of stickers featuring tropical and fun designs, such as flowers, palm trees, animals, and beach items; large, playful googly eyes; hand-drawn outlines of children’s hands.

One Rb World 2024 Says “Mahalo” to the Retinoblastoma Community – Day Three | Page 4

The final moments of the 7th One Rb World Conference in Honolulu, Hawaii, were dedicated to patients, families, and survivors, showcasing how empowering them can transform their individual experience and collective progress. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, tells of the inspiring child life programming, and groundbreaking patient engaged-research building bridges of hope and healing for our retinoblastoma community worldwide.

A group of people gather around a sign that says "Retinoblastoma Research Symposium, Saturday December 9 - Sunday December 10. Registration, 3rd floor lobby"

Shaping Retinoblastoma Research Development Through Patient Engagement

Parents and survivors have valuable lived experience that can shape retinoblastoma research to improve health outcomes. Kaitlyn Flegg reviews progress of the innovative Canadian Retinoblastoma Research Advisory Board, where parent and survivor priorities are setting the research agenda.