- The contest aims to unite people impacted by Gaucher disease and raise awareness of this rare condition
- Gaucher disease is an inherited rare disease that affects approximately one in 50,000 people1 and occurs more frequently in the Ashkenazi Jewish population
Lexington, MA – July 01, 2015 – Shire plc (LSE: SHP, NASDAQ: SHPG) today announced the launch of the Spotlight on Gaucher film contest, encouraging those whose lives have been touched by Gaucher disease to share a video about their experience with the condition. Supported by the European Gaucher Alliance (EGA), the Spotlight on Gaucher film contest aims to unite people impacted by Gaucher disease through personal stories offering inspiration to others living with this rare disease. The stories will also help to raise general awareness of the signs and symptoms of Gaucher disease – a rare condition in which patients frequently experience delayed diagnosis2.
“This contest enables the Gaucher community to come together and share both their stories of challenges and triumphs,” said Tanya Collin-Histed, Chief Executive Officer, European Gaucher Alliance. “Sharing personal and inspiring stories can often empower people impacted by rare diseases to overcome some of the obstacles they are facing. We also hope these stories will help raise awareness of the significant impact Gaucher disease has on patients’ and families’ lives.”
The contest invites all individuals around the world impacted by or interested in Gaucher disease to make a video of up to five minutes about life with or experiences of Gaucher disease. Entry guidelines and tips on how to tell and film your own story are provided on the contest site. The closing date for entries is August 31, 2015, and winners will be announced to mark International Gaucher Day, October 1, 2015. The winners will be selected by a fully independent external judging panel, including representatives from the EGA, a Jewish film school and the Gaucher disease medical community. Contest winners will be issued with a certificate and receive additional recognition for their entry. All eligible entries will be showcased on the contest site and a dedicated YouTube page.
“At Shire, we believe in the importance of giving patients and the community a voice, and a way of sharing their own experiences of living with a rare disease,” said Emmanuel Dulac, Head of the Rare Diseases Business Unit at Shire. “The Spotlight on Gaucher film contest provides a platform for those impacted by this life-altering condition to creatively articulate the effect Gaucher disease has on their lives.”
For more information on the Spotlight on Gaucher film contest, and to enter the contest, visit: www.spotlightongaucher.com or www.youtube.com/spotlightongaucher.
About Gaucher Disease
Gaucher disease is an inherited rare disease that affects approximately one in 50,000 people1. It is caused by the deficiency, absence or incomplete functioning of an enzyme called glucocerebrosidase, an enzyme that normally metabolises a fatty substance called glucocerebroside. This causes a build-up of lipids in cells, resulting in progressive damage to tissues and major organs including the spleen, liver, bones and brain1. Both men and women are affected by Gaucher disease and although it can occur in any racial or ethnic group, it is more common amongst people of Ashkenazi Jewish descent, where it affects around one in 850 people1.
About the European Gaucher Alliance (EGA)
The EGA is a pan-European umbrella group representing the interest of Gaucher Patients and those of non for profit Gaucher Patient Groups throughout Europe and elsewhere in the world. For more information visit: www.eurogaucher.org
For further information please contact:
NOTES TO EDITORS
Shire enables people with life-altering conditions to lead better lives.
Our strategy is to focus on developing and marketing innovative specialty medicines to meet significant unmet patient needs.
We focus on providing treatments in Rare Diseases, Neuroscience, Gastrointestinal, and Internal Medicine and we are developing treatments for symptomatic conditions treated by specialist physicians in other targeted therapeutic areas, such as Ophthalmics.
- Baris MD, et al. Gaucher Disease: The Metabolic Defect, Pathophysiology, Phenotypes and Natural History. Pediatric Endocrinology Reviews. 2014:12:72-78.
- Thomas A, et al. Gaucher disease: haematological presentations and complications. British Journal of Haematology. 2015: 165:428.