患者さん・ご家族との取り組み

シャイアー社（当時 現武田薬品）は、「世界ゴーシェ病の日」に向けて「ゴーシェ病にスポットライトを当てる」というテーマで動画コンテストを2015年7月から開催し、世界各国で作品を募集しました。欧州ゴーシェ病患者会連盟から協賛を受けた当コンテストは、ゴーシェ病について認知向上を図るために、ゴーシェ病に関わる人たちから個人のストーリーを伝える動画を投稿していただき、多くの人たちと経験を共有することで希望のメッセージをお届けしようという企画です。個人のストーリーを通じてゴーシェ病に関わっている方々を結びつけ、その他の希少疾患と闘う人たちに勇気を与え、クリエイティブな作品紹介の場をご提供することを目的としています。

フィルムコンテストで最優秀賞及び優秀賞を受賞したのは、次の2つの作品です。
1.　最優秀賞：「私の娘」（アルゼンチン）
2.　優秀賞：「モレナ」（アルゼンチン）

注：ゴーシェ病フィルムコンテストは、シャイアー社（当時 現武田薬品）が企画、展開、協賛しました。
シャイアー社（当時 現武田薬品）は、投稿されたビデオがコンテストの募集要項を遵守しているかどうかを確認する際にのみ関与し、参加者と直接的な接触を行っていません。

Winners of the 2015 Spotlight on Gaucher Film Contest

The winning video entries were announced for International Gaucher Day – October 1, 2015.

Contest Winner

My Daughter & Gaucher Disease字幕あり

Juliana was diagnosed at the age of one. Watch her mother, Nora, tell the story of her daughters experience of the disease. (Argentina)

Runner Up

Morena’s Story 字幕あり

Older Brother Rodrigo was diagnosed with Gaucher Disease first. Morena was diagnosed shortly after. Watch a sister’s story. (Argentina)

Contest Entries

Here you can view contest entries from the Gaucher community.

Sharing experience of Gaucher disease may empower others to better face the challenges of living with the condition, while also raising awareness of the signs and symptoms.

Children with Type II and Type III Gaucher Disease in Japan

The majority of Gaucher disease patients in Japan are diagnosed as Type II or Type III, which is characterized by neurological problems. Watch a video montage about the lives of children in Japan who have Gaucher disease. (Japan)

My Life with Gaucher 字幕あり

Learn more about a day in the life with Gaucher disease. (Israel)

Little Miss Hannah’s Video 字幕あり

Watch this moving story about Hannah’s fight with Gaucher disease and how her family are continuing to raise awareness of the condition. Hannah sadly passed away at the age of 3 years, 4 months, but her story continues in her memory. (USA)

A Father’s Story of Gaucher Disease 字幕あり

A father discusses the challenges for his young son with Faucher Disease living in Rwanda. (Africa)

Jhon Jairo’s Advice 字幕あり

hon Jairo shares his words of advice on how to cope with living with Gaucher disease. (Colombia)

Gaucher Disease in Russia 字幕あり

Watch a video montage about the lives of people in Russia impacted by Gaucher disease. (Russia)

Jana’s Story…Lost in the Desert of Gaucher Disease 字幕あり

Little six year old Jana was diagnosed with Type I Gaucher disease in 2012. Watch her mother tell her story. (Jordan)

Camila’s Story 字幕あり

20 year old Camila was diagnosed with Gaucher disease just over a year ago. Hear her story since diagnosis. (Argentina)

Bianca’s Story 字幕あり

Watch young Bianca and her mum tell people about Gaucher Disease and their hope for earlier diagnosis. (Argentina)

Maria’s Story 字幕あり

Childhood and adolescence was a difficult time for Maria, learn how her diagnosis of Gaucher Disease has made her a different person today. (Colombia)

Rodrigo’s Story 字幕あり

Rodrigo and Morena are siblings, and both have Gaucher disease. Watch more about Rodrigo’s diagnosis and life with Gaucher. (Argentina)

Life with Gaucher 字幕あり

Gaucher disease patient Elaine reads a poem about her experience of living with Gaucher disease called “My Life”. (Israel)