There is great flux in all aspects of the lives of families affected by a rare genetic disorders in the UK. 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 educational needs access support at school. All of this change is taking place alongside advances in the science of diagnosis and the availability of treatments for rare and genetic disorders, making it essential for those affected to better understand how the world is changing so that they can be more knowledgeable and better empowered.
To help them, Global Genes has partnered with Genetic Disorders UK, (GDUK) the UK charity famous for its national fundraising day, Jeans for Genes Day, to help build a more powerful voice for patients affected by rare genetic disorders.
“We’re thrilled to have partnered with Global Genes. This is an inspiring organisation which shares our passion for building a wider community of support for those affected by genetic disorders and a stronger, louder voice for all to hear,” said Caroline Harding, CEO of Genetic Disorders UK. “Our union will enable us each to have the capacity to help families reach the right support, resources and knowledge that they so urgently need to take control of their genetic disorder and be prepared to face the challenges ahead both in the UK and beyond.”
The two non-profit organizations have joined forces to collaborate on projects that will address key issues to help advance the support available to those affected by rare genetic disorders globally. This will include a first of its kind collaborative event in London in the spring of 2015—the 1st Annual Genetic Disorders Leadership Symposium. The Symposium will bring together leaders of UK based rare genetic disorder charities and other patient champions to create an environment in which they can learn from experts, share best practices and network to better benefit the families they support. More information about the symposium will be released in early January.
“There are currently more than 7,000 diagnosed rare disorders and new disorders are being identified every day with 350 million people affected worldwide,” said Nicole Boice, founder and CEO of Global Genes. “Although every rare genetic disorder is different, the challenges facing individuals and families affected by rare genetic disorders are the same. By harnessing our collective experience, Global Genes and GDUK can create a much stronger and more effective support network for all.”
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:
About Global Genes – Allies in Rare Disease
Global Genes™ is a leading rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease by providing patients with educational tools, building awareness, providing critical connections to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 35 million Americans and over 350 million people worldwide.
For more information about Global Genes, please visit the following links: