Ciliopathy Alliance Awarded Jeans for Genes Grant
The Ciliopathy Alliance is delighted to have been awarded a grant of £25,000 from Genetic Disorders UK, the national charity that organizes Jeans for Genes Day.
This donation will be used to fund a Family Conference 31 May to 2 June 2013.
Tess Harris of the Ciliopathy Alliance said: “This grant is wonderful news. It means that we can bring together families of children living with ciliopathies with doctors, scientists and commissioners to work together on a patient-driven research agenda, share best practice and determine optimum health and social care pathways.
Genetic Disorders UK is the national charity that organizes the annual Jeans for Genes Day fundraising event when school children and office workers wear their jeans in exchange for a donation to the charity. Although individually genetic disorders are rare, together they affect 1 in 25 children. This means that more than 30,000 babies each year are born in the UK with a genetic condition. Sadly, genetic disorders are the biggest cause of death of children aged 14 years and under. Funds from Jeans for Genes Day are granted to specialised charities to provide care and support for children affected by genetic disorders.