At present in the UK, there is great flux in all aspects of the lives of families affected by a genetic disorders. The NHS is undergoing major changes in its core structure, the benefits system is becoming more difficult to access and the new Children and Families Act 2014 will completely overhaul the way children with special needs access educational support at school. All of this change is taking place alongside advances in the science of diagnosis and the availability of treatments for genetic disorders, making it essential for those affected to better understand how the world is changing so that they can be more knowledgeable and more effective advocates.
The goal of the 2nd Annual Genetic Disorders Leadership Symposium is to bring together leaders of UK based genetic disorder charities and other patient advocates to create an environment in which they can learn from experts, share best practices and network. It is of critical importance to help those advocates affected by genetic disorders ‘stakeholders in their own care’, and this Annual Symposium is set to address these and other important topics in a first of it’s kind collaborative event.
About Genetic Disorders UK
Genetic Disorders UK (GDUK) is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders. Their mission is to be the leading source of information and support for both those affected by a genetic disorder, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared. GDUK is run by a small team that also organises the annual fundraising event, Jeans for Genes Day when thousands of adults and children across the UK pay £2 /£1 to wear their jeans to work or school to raise much-needed funds for children affected by genetic disorders in the UK.
For more information about Genetic Disorders UK, please visit the following links: