Simon Stones

Multi-Award Winning Patient Advocate and Consultant, Collaboro Consulting by Simon R. Stones

Simon has lived with arthritis from the age of three and Crohn’s disease from the age of 14. He has also been diagnosed with joint hypermobility, fibromyalgia and chronic urticaria. In more recent years, Simon cared for his treasured mum, who lived with a significant number of chronic health conditions. Sadly, she died from pancreatic cancer in November 2019.

Simon’s advocacy journey began in 2012, when he joined a national clinical advisory group for childhood arthritis aged 18. Since then, Simon has taken every opportunity to help make a difference for people living with chronic conditions and their families. He has advocated locally, nationally and internationally for patients and families to be valued, respected and involved in their care, as well as research. Simon has served on more than 70 groups and committees, and has over 150 research- and advocacy-related publications. He is currently a trustee of RAiISE – a charity supporting young people with invisible illnesses. He previously served Fibromyalgia Action UK as a trustee and the European Network for Children with Arthritis and Autoinflammatory Diseases as a Board Member. He is also the Past-President of the European Network of Fibromyalgia Associations.

In addition to his advocacy mission, Simon has undertaken a PhD at the University of Leeds, where he developed recommendations to inform and empower young people with arthritis to take control of their health and wellbeing, together with their families and professionals involved in their care and education.

Useful links

www.simonstones.com