National Gaucher Foundation - Gaucher Disease
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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.

The people behind the research for Gaucher
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.
Click here to read
Books and Pamphlets
Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective
Courtesy of the Genetic Alliance
Click here to read
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
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
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
Brochures
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.
NGF Spanish 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.
Videos
Madelyn Schloss discusses Gaucher disease at her school's learning festival
Madelyn was diagnosed with Gaucher at age six and wants to connect with newly diagnosed kids
Click here to watch the video
Gaucher Educational Meeting
3/30-2014
Bone Disease and Gaucher Disease
Guest Speaker: Swati Sathe, MD MS,
Assistant Professor New York Medical College
St. Joseph’s Regional Medical Center
Paterson, NJ
Click here to watch the video
Turning the Camera on Myself... Gaucher Disease
Leanna Mullen - Film Reel Productions
As a videographer/photographer, I wanted to help create awareness about Gaucher Awareness Month... so I created a video to share online.
Click here to watch the video
Emma's Garden: Growing with Gaucher
Emma's Garden: Growing with Gaucher grew out of a personal speech Emma 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, when she embarked on treatment for her condition and a future of new possibilities for her health.
Click here to watch the video
El jardín de Emma (Emma's Garden: Growing with Gaucher en Español)
El Jardín de Emma: Creciendo con Gaucher surgió de un valiente y personal discurso pronunciado por Emma durante un encuentro de pacientes en la Fundación Nacional de Gaucher en Canadá en el año 2007, acerca de tener Gaucher.
Click here to watch the video
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
Emily's Journey With Gaucher Disease (animated video)
Sponsored by the National Gaucher Foundation
The story is about an adventurous little girl with Gaucher disease.
Click here to view the video
Elliott Gould explains inheritance and prevalence of Gaucher disease
View this clip that uses playing cards to illustrate how genes from a mother and father can combine to pass on Gaucher disease.
Click here to watch the video
Ted Meyer & Bone Crisis
Ted Meyer describes what it is like to experience a bone crisis, and learn how Gaucher disease causes this painful condition.
Click here to watch the video
Common Symptoms
Several patients and Elliott Gould discuss common symptoms and how Gaucher disease leads to these signs & symptoms.
Click here to watch the video
A video by Shade Sparrow and her struggles with Gaucher Disease
I've been battling this devastating condition my whole life. I'm 22 diagnosed at 14 already been through a lifetime worth of Dr visits, Almost died when I was 5 had to be put into a medically induced coma for 4 days, 5 known Gaucher related surgeries (including the portacath placement), I can barely walk, I have to use a wheelchair to get around stores.
Click here to watch the video
Living with Gaucher Disease: A video made by Calib Baukol and his life with Gaucher
The enzyme I'm receiveing costs 18,000 every 2 weeks...& I want more!
Click here to watch the video
Ari Zimran, MD from Shaare Zedek Medical Center, Israel discusses biomarkers in Gaucher Disease
Ari Zimran, MD, Shaare Zedek Medical Center in Jerusalem, Israel, discusses the use of biomarkers in Gaucher disease, which help physicians monitor the progression of the disease.
Click here to watch the video
Faces of Hope and Innocence: Children Diagnosed with Gaucher's Types 2 and 3
Gaucher's Disease Types 2 and 3, an ultra-rare and fatal neurodegenerative genetic disorder that affects about 300 children worldwide.
Click here to watch the video
National Gaucher Foundation, Gaucher Conference 2010
November 7 & 8, 2010
Marriott Atlanta Buckhead Hotel and Conference Center
Click here to view the videos
Gaucher disease on TV
Healthy Body, Healthy Mind - Episode 1603
Gaucher Disease: A Mysterious Genetic Disorder
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
Media Archive
Video

- Little Miss Hannah
- Scarred For Life Video of Ted Meyer Art Exhibit
- Living With Gaucher Disease
- Educating Others About Gaucher Disease
- A Message to Elijah/Gaucher video
- EOH Museum Exhibit Video
- Dr. Roscoe Brady Gaucher TV commercial

Audio

- A family affected by Gaucher Disease
- Cause of Gaucher/history of research