Tilly Rose

An author and activist, championing access to higher education and patient advocacy

After 20 years as a patient, Tilly made the decision to share her patient journey on Instagram and saw first-hand how her experiences resonated with followers. She now shares her personal story in ‘chapters’ on @thattillyrose and recently launched @thatpatientcollective – a platform for other patients to share their stories and support each other along the way. Tilly is now speaking across global stages. In recent months, she has opened and closed the Global Tuberculosis Summit, travelled to the US to speak at QIAGEN’S annual kick-off conference and to Brussels where she was awarded the EURORDIS (Rare Disease Europe) Social Media Award 2026 for her patient advocacy.