Colin Stone

Colin Stone is a dedicated advocate for Costello syndrome and RASopathies, having founded the International Costello Syndrome Support Group (ICSSG) in 1995 shortly after his daughter was diagnosed with the condition. His work has been instrumental in connecting families, researchers, and healthcare professionals, ensuring that individuals affected by Costello syndrome receive support and access to the latest medical advancements.

In 2001, Stone registered a charity to support Costello syndrome families worldwide, providing resources, guidance, and community-building initiatives. Costello syndrome is an extremely rare genetic disorder, affecting just 1 in 1.3 million births, and is part of a broader group of conditions known as RASopathies, which impact 1 in 1,000 births.

Recognizing the need for greater awareness and research, Stone launched the RASopathies Network at the House of Lords in 2010, an initiative aimed at promoting research into all aspects of RASopathies. The network hosts international symposiums and study days, fostering collaboration among scientists, clinicians, and patient advocates to improve diagnostic accuracy and treatment strategies.

Stone also founded CostelloKids, an organization dedicated to enhancing the lives of individuals affected by Costello syndrome. His work has helped families navigate the complexities of the disorder, ensuring that children and adults receive the best possible care and therapeutic interventions.

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