Press Releases

Genetic Disorders UK and Global Genes Collaborate on the First Event for Leaders of Rare Genetic Disorder Charities and Support Groups

January 29, 2015

Global Genes, a leading rare disease patient advocacy organization based in the USA, has partnered with Genetic Disorders UK (GDUK), the UK charity famous for its national fundraising campaign, Jeans for Genes Day, to deliver the UK’s 1st Genetic Disorders Leadership Symposium at the Amba Hotel Charing Cross in London March 6 – 7, 2015.
ALISO VIEJO, Calif. — January 27, 2015 —The two non-profit organizations have joined forces to collaborate on this first of its kind event that will bring together advocates of rare and genetic disorder patients to create an environment in which they can learn from experts, share best practices and network.
The symposium will be an instrumental opportunity for leaders of UK-based rare and genetic disorder charities and support groups to meet with and learn from the country’s leading experts in genetics, healthcare, disability rights, patient registries, clinical trials and gene therapy. Revered speakers include Dr. Claire Turnbull from Genomics England, John Murray from the Specialised Healthcare Alliance, William van’t Hoff from the National Institute for Health Research, Professor Bobby Gaspar from the section of Molecular and Cellular Immunology at the UCL Institute of Child Health and many more. English actor, patient advocate and special guest Warwick Davis will be joining as keynote speaker at the evening dinner reception on March 6th.
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 the research, treatment and care of affected individuals and families in the future.
“Global Genes is committed to helping build a connected community of collaborative, educated and empowered patient advocates,” said Nicole Boice, Founder and CEO of Global Genes, “We are honored to be collaborating with many of the community’s key leaders in the UK, who also believe that this is critical in our global fight against rare genetic disorders. 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.”
While individual genetic disorders are rare, there are currently more than 7,000 diagnosed rare and genetic disorders. New disorders are being identified every day with 350 million people affected worldwide. Although every genetic disorder is different, the challenges facing individuals and families are often the same. By facilitating this unique event to support charities and patient champions, GDUK 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.
“We are thrilled 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.” said Caroline Harding, Co-Founder and CEO of Genetic Disorders UK, “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.”
Attendance at the 1st Genetic Disorders Leadership Symposium 2015 is limited. For further details on the event and to view the agenda, visit
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:
Twitter: @GlobalGenes
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:
Twitter: @GeneticDisUK