The National Gaucher Foundation (NGF) is an independent nonprofit dedicated to serving U.S. patients with Gaucher disease and their families. Through financial support, educational programming, patient services, and collaboration with medical professionals, NGF empowers Gaucher patients to live a better today.
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.
Today, the NGF advocates for patients by:
- Imparting education both in general about Gaucher disease as well as topics specifically pertinent to the Gaucher community
- Conducting outreach to raise awareness about Gaucher disease among health professionals and people who have not yet been diagnosed
- Promoting programs like the Optimal Health Initiative for patients with Gaucher disease. The NGF’s Optimal Health Advisors are licensed social workers who are available to speak with patients or their caregivers and connect them to the supports and resources necessary to achieve and maintain optimal health
- Offering a Diagnostic Initiative, a clinical testing program for the diagnosis of Gaucher disease via enzymatic and molecular analysis, for those who have a familial history of Gaucher disease or whose physician is considering it as part of the differential diagnosis
- Providing financial assistance programs for eligible patients and their families through the CARE Programs
- Hosting meetings of patients, physicians and researchers
- 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.