National Gaucher Foundation - Gaucher Disease
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National Gaucher Foundation's 30th Anniversary

In celebration of our 30th anniversary, the NGF has the pleasure of sharing some exciting news and events planned for 2014. We look forward to the participation of families and individuals with Gaucher disease, and others who have associations and relationships to those in the Gaucher community, such as physicians and counselors, treatment and infusion centers, organizations, pharmaceutical companies and institutions.

NGF 30th Anniversary: This year, the NGF celebrates its 30th year of support and services to families and individuals with Gaucher disease. Established in 1984, the NGF was founded to fund research into treatments and a cure for Gaucher disease and funded millions of dollars to make the first treatment available to everyone. Our financial, educational and support services have given hope to hundreds of families and individuals with Gaucher disease.

National Gaucher Conference

The Conference has been canceled due to circumstances beyond our control. The Conference will be rescheduled to October 2015.

Win $500! Enter the Gaucher Video Contest: Submit a video based on your personal experience with Gaucher disease and you could win a $500 Cash Gift Card! To help raise awareness of Gaucher, the NGF is promoting a video contest challenging entrants to produce their most creative ideas for Gaucher awareness and education. Share, through video, your experiences in living with Gaucher disease and how it has affected your life.

You don’t have to have Gaucher to make a video. Others who have a connection to Gaucher may also enter the contest. Post your 3-minute video to YouTube and send the location URL to the NGF at ngf@gaucherdisease.org for viewing. The video may be one that was previously produced, or a new one. The deadline for submission of video URLs is August 29, 2014. Go to www.gaucherdisease.org for guidelines and more information.

NGF's Gaucher Patient Meetings: This year, the NGF will hold educational meetings in various cities. Don't miss a meeting because we don't have your contact information. Email your contact information to ngf@gaucherdisease.org to receive meeting invitations. We encourage Gaucher treatment centers to post these meetings in their treatment and infusion centers.

Contribute to Gaucher Community News: The NGF publishes a quarterly newsletter to which anyone with a connection to Gaucher disease may contribute. If you or a family member has Gaucher disease, we invite you to share your stories and photos with the NGF for our newsletter and website. We know that many treatment and infusion centers and other institutions have implemented some great Gaucher programs for children and adults who have Gaucher disease and for their caretakers as well.

We invite you to share with us news articles and photos related to those programs and services, so that they can be published in one of our newsletters and/or our website. News articles may be 250 to 400 words and may be sent to ngf@gaucherdisease.org. Please refer to “Gaucher Community News” in the headline of your email or other correspondence. We will consider your article for one of our four quarterly publications and advise when your article will be run. It is our hope that you will also participate in the NGF’s above-referred to 2014 Gaucher video contest.

Gaucher treatment and infusion center contact and physician information: The NGF’s website has, for many years, had a listing of Gaucher treatment and infusion centers and other institutions that provide services to the Gaucher community. Please take this opportunity to update your information for the NGF, so that visitors to our site can determine where their nearest Gaucher center is located. Email us at ngf@gaucherdisease.org and refer to “Treatment Center Updates” in the subject heading. See “US Gaucher Physicians and Treatment locations” at our website for your listing.