Ezara-Mai is a committed and tireless advocate for young people. She believes that every young patient should have a voice.
Through Team Ezara, she has raised over £15,000 for Great Ormond Street Hospital (GOSH) and her goal is to raise £100K by 2025. Ezara-Mai also contributes to the GOSH youth patient forum and is committed to raising awareness about genetic illnesses and their treatment. She shares her experiences with geneticists, media companies and the National Health Service (NHS) in an effort to drive change. Ezara-Mai has achieved all of this while living with a painful and serious rare genetic illness.
At just 13, Ezara-Mai is creating a legacy for children, young people and their families across UK and internationally, who are experiencing genetic illness. By raising awareness and increasing learning in professionals, and the wider public she is building a future for high-quality genetic research, aiming to improve treatments and services.