Gaucher and Rare Disease Library
The NGF opened this library in order to better serve the Gaucher patient population and their families. There are many publications, videos, brochures and pamphlets produced each year. Most of which are not exchanged between the National Gaucher Foundation, the pharmaceutical companies who produce Gaucher treatments, patients, physicians and Non-profit organizations such as the JGDC, NTSAD, NORD and the Genetic Alliance. We hope to make some of these offerings available and welcome your submissions.
Non-commercial books, videos, brochures and pamphlets related to Gaucher disease may be submitted to the NGF for publication in the Library. This will also include collateral pieces that cover Gaucher and other rare diseases. Non-commercial: Specific drug names may not be mentioned in the story line of the book or video and may not appear in the educational information given in your pamphlet or brochure. Your company or organization name and information about a specific drug may only appear at the end of your book, brochure, pamphlet or video.
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| The people behind the research for Gaucher |
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Meet some the people behind the development of treatment for Gaucher
Each one of these physicians, researchers geneticists has contributed immensely to the production of treatment for Gaucher disease, why we have Gaucher disease, who is affected, symptoms, testing. what other disease can affected those with Gaucher - like Parkinson's and cancer and osteoporosis, etc. Each person will have is own drawer.
Click here to read |
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David Explores Gaucher Disease
Sponsored by Shire Human Genetics, Inc.
Authored by Carol Fisher, RN, NYC
The story is about David, who is newly diagnosed with Gaucher disease.
Click to read PDF or order free hard copy of the book at www.VPRIV.com
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How To Talk To Your Family About Gaucher Disease
Sponsored by Genetic Alliance and Genzyme
The booklet gives different approaches for discussing Gaucher with your family.
Click here to read the booklet in English or Spanish |
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GiGi and Type 1 Gaucher
The story of Gigi, was originally written in Spanish by a nurse with Genzyme Brazil in 2002. It is designed as a tool for parents or guardians to use when explaining Type 1 Gaucher disease and treatment to their child. The book was later translated to English and copyrighted in 2004 by Genzyme Corporation.
Click to read PDF |
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NGF Gaucher Brochure
Sponsored by the National Gaucher Foundation
The brochure covers many aspects of Gaucher disease from early research to finding a cure and/or treatment. You'll find answers to questions such as how Gaucher is passed to our children, information about diagnosis and treatment and other relevant information.
Click here to view the PDF. Call 800-504-3189 to order brochures. |
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Apples, Oranges, Cancer and Gaucher Video
By Rosina Papantonio, National Gaucher Foundation
An educational, hopeful and heartfelt video about cancer and Gaucher disease as seen through the eyes of Rosina Papantonio who has devoted 13 years of her life to the National Gaucher Foundation. This video captures Rosina’s passion for promoting awareness of Gaucher disease and cancer in an effort to help save lives.
Click here to watch the video |
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National Gaucher Foundation, Gaucher Conference 2010
November 7 & 8, 2010
Marriott Atlanta Buckhead Hotel and Conference Center
Click here to view the videos |
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Gaucher disease on TV
Healthy Body, Healthy Mind - Episode 1603
Gaucher Disease: A Mysterious Genetic Disorde
This program explores the history of this condition and features patients who talk about their struggles with Gaucher Disease.
Click here to view the video |
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