Maddie Collin was diagnosed with Type 3 Gaucher disease in 1996 at the age of 17 months. She joined the UK Gaucher Association Board in 2015 in order to learn more about current issues facing the Gaucher community and to represent Type 3 patients at meetings.

Since then, Maddie has graduated from the University of Bath, where she completed both her BSc and MSc dissertation on the topic of patient advocacy and rare diseases.

Last year she joined the UK Gaucher Association as the charities’ Project Coordinator and has recently joined the team at Aparito as the Patient Accelerator Coordinator. Through the launch of the Digital Endpoints Patient Group Accelerator programme Aparito are hoping to address the high unmet needs of patient communities by co-developing new digital endpoints with patient groups.

Maddie is responsible for liaising with patient organisations, reviewing applications, conducting research to identify outcome measures and supporting user testing of Aparito’s Atom5™ technology. Amongst other aspects of her job, Maddie enjoys meeting new people and learning from her colleagues. She is also passionate about patient-led research, improving the quality of life of patients and enabling them to reach their full potential.