Shire Launches Spotlight on Gaucher Film Contest and Calls for Video Entries Sharing Experiences of Living with Gaucher Disease

Shire Launches Spotlight on Gaucher Film Contest and Calls for Video Entries Sharing Experiences of Living with Gaucher Disease

LEXINGTON, Massachusetts, July 1, 2015 /PRNewswire/ --




- 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
people[1] and occurs more frequently in the Ashkenazi Jewish population


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 diagnosis.[2]



"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: http://www.spotlightongaucher.com or
http://www.youtube.com/spotlightongaucher.



About Gaucher Disease  



Gaucher disease is an inherited rare disease that affects approximately one in 50,000
people.[1] 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 brain.[1] 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 people.[1]



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: http://www.eurogaucher.org



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.



The Spotlight on Gaucher Film Contest is initiated, developed and funded by Shire.
Shire will have no direct contact with the participants and the only influence on the
content is ensuring the videos are compliant with the terms of the contest.  



http://www.shire.com



References 




1) Baris MD, et al. Gaucher Disease: The Metabolic Defect, Pathophysiology,
Phenotypes and Natural History. Pediatric Endocrinology Reviews. 2014:12:72-78.
2) Thomas A, et al. Gaucher disease: haematological presentations and complications.
British Journal of Haematology. 2015: 165:428.


For further information please contact: 




 
Media 
Lauren O'Brien, Shire, lobrien@shire.com, +41-44-288-4040 
Tanya Collin-Histed, EGA, tanya@eurogaucher.org, +44-1453-549231 


 



Shire plc


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