STONE, COLIN

I founded the International Costello syndrome support group in 1995 shortly after my daughter was diagnosed with the syndrome. In 2001 I registered a charity with the aim of supporting Costello syndrome families around the world.Costello syndrome affects just 1 in1.3 million births. It is part of a larger group of conditions known as RASopathies. In 2010 I launched RASopathies network at the House of Lords. The networks aim is to promote research into all aspects of RASopathies, through the hosting of international symposiums and study days. RASopathies are the largest group of developmental disorders affecting 1 in1000 births. Our aims are supporting research and best practice in therapy and care for all children and adults affected by Costello syndromeI am just a parent who started CostelloKids with the aim of improving the outcomes for all people affected by this rare disorder