The National Gaucher Foundation (NGF) is an independent nonprofit organization that serves U.S. patients with Gaucher disease and their families. A small group of families founded the NGF in 1984 to help develop treatments and a cure for Gaucher disease. They believed that patients should have more information and support in understanding the disease and finding new ways to treat it.
The NGF has directed millions of dollars to research at leading medical centers to develop Gaucher disease treatment and a cure for Gaucher disease.
National Gaucher Foundation: What We Do
Early on, the NGF was involved in pioneering research targeted at correcting the enzyme deficiency that causes Gaucher disease. Thanks to efforts by the NGF and others, enzyme replacement therapy (ERT) became available in the United States in the early 1990s.
In addition to research funding, the NGF advocates for patients by:
- Continuing to support research for a cure for all types of Gaucher disease
- Promoting new programs like the Optimal Health Initiative for patients with Gaucher disease currently receiving treatment. The program’s goal is to connect patients with Gaucher specialists who can ensure proper treatment and provide a long-term health map.
- Conducting education and outreach to raise awareness about Gaucher disease among health professionals and people who have not yet been diagnosed
- Hosting meetings of patients, physicians and researchers
- Providing psychological support for patients and their families
- Supporting legislation and programs vital to the Gaucher community
Whether you or your family members are newly diagnosed, misdiagnosed or currently receiving treatment, the NGF wants you to know that you are not alone. We are here to help you find physicians, treatment, financial assistance and information related to all aspects of Gaucher disease.
For more information, contact the NGF via email or call (800) 504-3189.