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GaucherCanada
เข้าร่วมเมื่อ 4 ก.พ. 2013
The Gaucher Canada Channel is a place to share video stories about life with Gaucher disease and other rare diseases. Gaucher disease is a rare genetic disorder that is passed down from parents to their children through the genes. Gaucher is the most common of the group of diseases called lysosomal storage disorders.
This channel is sponsored by the National Gaucher Foundation of Canada (NGF Canada). The Foundation's mission is to improve the health and well-being of Canadian patients living with Gaucher through community building, education, advocacy, and support of research.
This channel is sponsored by the National Gaucher Foundation of Canada (NGF Canada). The Foundation's mission is to improve the health and well-being of Canadian patients living with Gaucher through community building, education, advocacy, and support of research.
Lets Get Started with Social Media
Let's Get Started! with Social Media from Melissa Hogan during the Conversations with the Experts, 2013 Rare Patient Advocacy Summit by Global Genes. The full presentation is available here: vimeo.com/75931727
มุมมอง: 31
วีดีโอ
Birth of the National Gaucher Foundation of Canada
มุมมอง 28511 ปีที่แล้ว
gauchercanada.ca/ This is the inspiring founding story of the National Gaucher Foundation of Canada in the early 90s, when a new life altering treatment became available for Gaucher disease but was not yet accessible to patients in Canada. Learn about how families came together at the start, as well as, the current mission and role of the Foundation to support the Canadian Gaucher community. Vi...
Gaucher Canada BRAVE
มุมมอง 60611 ปีที่แล้ว
gauchercanada.ca/ A documentary about the experiences of the White Family with Gaucher disease, a rare genetic disorder.Shot in beautiful Victoria, British Columbia, the story follows the White sisters, Meghan and Katie who live with Gaucher, and their mother, Christine White, current President of the National Gaucher Foundation of Canada. A chance to discover how they've been impacted by Gauch...
Preview - Gaucher Canada BRAVE
มุมมอง 22811 ปีที่แล้ว
gauchercanada.ca/ Highlights of a documentary about the experiences of the White Family with Gaucher disease, a rare genetic disorder. Shot in beautiful Victoria, British Columbia, the story follows the White sisters, Meghan and Katie who live with Gaucher, and their mother, Christine White, current President of the National Gaucher Foundation of Canada. A chance to discover how they've been im...
Le jardin d'Emma : grandir avec Gaucher
มุมมอง 59011 ปีที่แล้ว
www.mynormal.ca/ "Le jardin d'Emma : grandir avec Gaucher" est le fruit d'un témoignage qu'Emma a partagé avec courage lors d'une rencontre de patients de la Fondation Canadienne de la Maladie de Gaucher en 2007. L'histoire retrace le parcours d'Emma depuis le moment où elle a été diagnostiquée à l'âge de 3 ans, alors que les médecins n'avaient aucun traitement à offrir à ses parents angoissés,...
Preview - Growing with Gaucher Disease
มุมมอง 42811 ปีที่แล้ว
View full version at: th-cam.com/video/BdFwp_wWQow/w-d-xo.html This video grew out of a personal speech Emma Rooney bravely delivered at a National Gaucher Foundation of Canada patient meeting in 2007 about having Gaucher disease. The story follows Emma's journey from her initial diagnosis at age 3 - when there were no treatment options available for doctors to present to her very worried paren...
Growing with Gaucher - a digital story
มุมมอง 3.7K11 ปีที่แล้ว
www.mynormal.ca/ "Emma's Garden: Growing with Gaucher" grew out of a personal speech Emma Rooney bravely delivered at a National Gaucher Foundation of Canada patient meeting in 2007 about having Gaucher. The digital story follows Emma's journey from her initial diagnosis at age 3 - when there were no treatment options available for doctors to present to her very worried parents - up to age 13, ...
Wonderful telling Emma!
Bonjour. Mon fils est atteint de la maladie de gaucher. Il a huit mois et on va commencer la thérapie dans quelques jours. Merci bcp pour cette vidéo. Elle donne de l'espoir.
Really inspiring video Emma , Thanks for sharing ! (I was diagnosed when I was 10, I started ERT at 10,5, I am now 20 and better than ever :D )
Subtitles are available in German, Portuguese and Spanish. Press the CC button to turn-on and then make your language selection.
😖 gaucher is my last name
merci beaucoup pour cette petite vidéo très instructive
Emma, I didn't know you were living with Gaucher the entire time I worked with you because you live life to the fullest! It is so inspiring to see what you've done, how far you've come and how you're spreading the word about Gaucher! Keep it up! P.S. Love your blue polka dot bikini :)
Thanks for sharing your story Emma, very moving. I love Megan's drawings, they're beautiful.