Spotlight on Gaucher - The Video Contest

James Radke, PhD

The Spotlight on Gaucher Film Contest is an initiative by Shire Pharmaceuticals with the support of the European Gaucher Alliance (EGA) to provide a platform for families touched by Gaucher disease to share their experiences in a video format. The August 31st deadline for submission has been extended to September 13, 2015.
Recently we talked with Fintan Leonard, Global Marketing Lead in the Rare Diseases Business Unit at Shire about the contest.

RDR: What is the purpose of the Spotlight on Gaucher contest?

Fintan Leonard: The word spotlight is indicative of possibly looking for something that’s not easy to find.  It’s an online film or video contest which is providing a platform for Gaucher patients as well as their families or others who may be impacted by Gaucher disease to share their stories. Our hope is that through personal stories, this film contest will connect or unite people who are impacted by Gaucher disease and thus, offer inspiration to others living with this rare disease.

When will the winner be announced?

We intend to announce the winner on International Gaucher Day (October 1).  Contest winners will be issued with a contest certificate and receive additional recognition for their entry on our contest channels and from the EGA. All eligible entries will be showcased on the contest site and dedicated YouTube page.

What is the International Gaucher Day and what is Shire planning for that day?

International Gaucher Day is a day to unite the Gaucher community and to raise awareness of Gaucher disease. Not just amongst the Gaucher community but in the wider context. You see, Gaucher disease is a rare disease. It affects roughly 1 in 40,000 people and often, a Gaucher patient, when they get diagnosed, may have never actually heard of Gaucher disease and they’ve never met anyone else who’s had Gaucher disease, so it can be very isolating. So the objective of patient organizations like the EGA in holding International Gaucher Day is to raise that awareness so the people don’t feel alone.
Shire will host internal activities across the globe and will be announcing the winner of the contest to help raise awareness  of Gaucher disease on this important day.

Are the videos in the contest being well received?

We’ve had a number of really moving entries submitted so far from all over the world. We’ve had over 3,500 unique visits to the contest website and around 2,500 video views on the contest YouTube channel,. All of this is helping drive awareness of Gaucher disease.
On the contest website, there’s 8 videos from our International Gaucher disease ambassadors and each one is unique and emotive. These videos also illustrate that people do not have to be film buffs to be able to create one of these movies.

How will the winner be chosen?

By four people are on the judging panel. Those include: Elaine Benton, a blogger for the Huffington Post and a Gaucher patient herself; Neta Ariel, director of the Ma'aleh's film school in Israel; Tanya Collin-Histed, CEO of the European Gaucher Alliance, and; Dr. Ari Zimran of the Shaare Zedek Medical Center in Israel and a clinician who has the largest cohort of Gaucher patients in the world.

How else is Shire working with the patient groups to improve outcomes and awareness?

We’re committed to working with the community to raise awareness of rare diseases. We have programs in place to not only support patients once a diagnosis is made but also to help improve the diagnosis of patients—not just in Gaucher disease but across all of the rare diseases. We also provide specialized product support services to patients and their families affected by these diseases, obviously in accordance with local regulations. This program, amongst others, is to help connect patients.  We also have what we call the Gaucher Disease Ambassador Program, through which patients and caregivers share their experiences of the daily challenges of living with Gaucher disease in order to encourage and inspire others within the Gaucher community, and to show them that they are not alone. . We want to champion the patient voice within Shire, so this isn’t just an external thing. It’s also an internal thing for us and it’s really important that everything we do is centered around the patient. We want to work together positively with them to improve essentially the diagnosis, treatment, and the lives of these patients.

For more information about the video contest, visit
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