Costello Syndrome Support Group

We’re an “e-grass-roots” parent support group that shares information about Costello Syndrome (CS) with parents and health providers around the world. The International Costello syndrome support group was founded in 1997 to provide support and information for the families affected by this very rare, life-limiting genetic syndrome. It provides information to medical professionals in order to assist in research for potential treatments and assists families by sharing information and providing emotional and practical support Costello syndrome is a very rare genetic disorder with less then 340 people known to be diagnosed around the world. Beginning in early childhood, people with Costello syndrome are at an increased risk of developing certain cancerous and non-cancerous tumours. The most frequent cancerous tumour associated with Costello syndrome is a cancer of muscle tissue called a rhabdomyosarcoma. The cause of Costello Syndrome was unknown until 2005 when the gene for was identified. This discovery lead to the understanding as to why people with this syndrome have a high risk of developing Cancer. Researchers now believe that by understanding the genetics of Costello Syndrome will not only help us to provide a better future for people affected by the condition, but will also help scientists to understand how cancers form and develop, leading to new and novel treatments and therapies. One in three people will be diagnosed with cancer and one in five will die from the disease. Research into Costello Syndrome may be a key to improve the outcomes of all cancer sufferers. We are grateful for donations and bequests to help continue and expand this valuable work.