LONDON--(BUSINESS WIRE)--Genetic Disorders UK, the UK charity famous for its national fundraising campaign, Jeans for Genes Day, has partnered with Global Genes, a leading rare disease patient advocacy organisation based in the US, to deliver the UK’s 1st Genetic Disorders Leadership Symposium at the Amba Hotel Charing Cross in London on 6–7 March 2015. The two non-profit organisations have joined forces to collaborate on this first of its kind event that will bring together champions of rare genetic disorder patients to create an environment in which they can learn from experts, share best practice and network.
The symposium will be an invaluable opportunity for leaders of UK-based genetic disorder charities and support groups to meet with and learn from the country’s leading experts in genetics, healthcare policy, disability rights, the use of patient data, clinical trials and gene therapy. Revered speakers include Dr. Claire Turnbull from Genomics England, John Murray from the Specialised Healthcare Alliance, Angela Jackman from Maxwell Gillott, Dr Caroline Wright from the Wellcome Trust Sanger Institute, William van’t Hoff from Great Ormond Street Hospital for Children, Professor Bobby Gaspar from the UCL Institute of Child Health and Stuart Pritchard from Genetic Alliance UK. Distinguished actor and TV presenter and founder of Little People UK, Warwick Davis, will be joining as keynote speaker at the evening dinner reception on 6th March.
As a result of support from key industry sponsors including Alexion, Healthcare at Home Ltd, Hyperion, IDIS, Intercept Pharmaceuticals, NPS, and Retrophin, the event will provide invaluable practical information and contacts to help champions support those with rare genetic disorders, while also providing updates on key areas of science and policy that will influence research, and the treatment and care of affected individuals and families in the future.
While individually genetic disorders are rare, they affect 1 birth in every 25 in the UK. It is estimated that over half a million affected children and adults in the UK are living with the daily challenges of a genetic disorder. Although every genetic disorder is different, the issues facing individuals and families are often the same. By facilitating this unique event to support charities and patient champions, Genetic Disorders UK and Global Genes hope they can help build a much stronger and more effective support network for all who work to help those affected by rare genetic disorders in the UK.
Caroline Harding, co-founder and CEO of Genetic Disorders UK, said: “We are delighted to be collaborating with Global Genes on this inspiring event. Both organisations share a great passion for building a wider community of support for those affected by genetic disorders and a stronger, louder voice for all to hear. Our joint event will offer a wealth of information, resources and collaboration opportunities to the charities and support groups we work with, which will play a crucial role in helping them to empower their families and be fully prepared to face the challenges ahead.”
Nicole Boice, founder and CEO of Global Genes, said: “Global Genes is committed to helping build a connected community of collaborative, educated and empowered patient advocates. We are honoured to be collaborating with many of the community’s key leaders in the UK, who also believe that this is critical to help in our global fight against rare genetic disorders. With all sponsored places filled and a waiting list, the 1st Genetic Disorders Leadership Symposium is readying itself to become one of the most sought after events to foster collaboration and help facilitate a culture of shared learnings. We couldn’t be more excited about partnering on this first-time event.”
Attendance at the 1st Genetic Disorders Leadership Symposium is by invitation only. For further details on the event and to view the agenda, visit www.geneticdisordersuk.org
Notes to editors
About the 1st
Genetic Disorders Leadership Symposium
Date: 6–7 March 2015
Location: Amba Hotel Charing Cross, London
About Genetic Disorders UK
Genetic Disorders UK is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders. Its 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. Genetic Disorders UK 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 make a donation to wear their jeans to work or school to raise much-needed funds for children affected by genetic disorders in the UK.
About Global Genes™ – Allies in Rare Disease
Global Genes is a leading rare disease patient advocacy organisation. 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. Recognised 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 affect approximately 35 million Americans and over 350 million people worldwide.