NGF Community Blog

The 5 Most Common Ashkenazi Genetic Diseases

According to current estimates, as many as one in three Ashkenazi Jews, those with Eastern European descent, are carriers for certain genetic diseases, including Gaucher disease. Researchers think Ashkenazi genetic diseases arise because of the common ancestry many Jews share. While people from any ethnic group can develop genetic diseases, Ashkenazi Jews are at higher… Read More »

Topics: About Gaucher Disease, About the National Gaucher Foundation

NGF honors the life of biotech legend, Henri Termeer

National Gaucher Foundation is saddened by the sudden passing of Henri A. Termeer, the former chief executive officer (CEO) of Genzyme Corp. Described by a former colleague as “the dean of the biotech community,” Henri’s contributions to lysosomal storage diseases including Gaucher disease and other rare diseases are immeasurable. May his memory be for a blessing.

Topics: Gaucher Disease Treatment

Should your Medical History be in the International Gaucher Registry?

When it comes to improving Gaucher disease treatment, knowledge is power. The more data the medical community can gather on this rare condition, the better equipped they are to develop new ways of treating it. That’s where the International Collaborative Gaucher Group (ICGG) Gaucher Registry comes in. Launched in 1991, and directed by an international… Read More »

Topics: About Gaucher Disease, Living With Gaucher Disease

ERTs and SRTs: How They Work & What is New

For those whose lives are touched by Gaucher disease types 1 and 3, ERT (enzyme replacement therapy) and SRT (substrate reduction therapy) are often part of their regular routines. But in 1991, when the FDA approved the first form of ERT, this breakthrough felt miraculous, radically easing the disease’s signs and symptoms. This was followed… Read More »

Topics: About Gaucher Disease, Gaucher Disease Treatment

[Video] San Diego Patient Meeting

San Diego Patient Meeting

Topics: About Gaucher Disease, About the National Gaucher Foundation

Connection to Parkinson Disease Brings New Attention to Gaucher

A rare condition affecting about 1 in 40,000 live births, Gaucher disease has not always been a research priority. But times are changing. Since 1998, Dr. Ellen Sidransky, head of the Molecular Neurogenetics Section in the National Human Genome Research Institute of the National Institutes of Health in Maryland, has been at the forefront of… Read More »

Topics: Gaucher Disease Research

WORLD Symposium 2017

The 2017 WORLD Symposium was held February 13 – 17 in San Diego, CA. This is an international symposium focused on rare lysosomal storage disorders (LSD’s) for which over 1,500 participants attend. Participants range from expert physicians, researchers and treatment innovators in the field of LSD’s to patient advocacy leaders for organizations focused upon LSD’s…. Read More »

Topics: About Gaucher Disease

A Year of Growth at National Gaucher Foundation

At the age of four, Brian Berman, National Gaucher Foundation’s CEO, was diagnosed with type 1 Gaucher disease after suffering severe symptoms. The first person in the world to successfully receive enzyme replacement therapy for Gaucher disease, Mr. Berman’s personal journey from sick child to dynamic professional and married father of five has prepared him… Read More »

Topics: About the National Gaucher Foundation

[Video] Meet Dr. Pramod Mistry

Dr. Mistry is the director of the National Gaucher Disease Treatment Center and professor of pediatrics and medicine at Yale School of Medicine. He is board-certified in internal medicine. Dr. Mistry has authored numerous journal articles, book chapters and reviews on Gaucher disease. He has received several awards for his work on Gaucher disease, including:… Read More »

Topics: About Gaucher Disease, Gaucher Disease Research

Gaucher Disease Pain Management

For many Gaucher patients, dealing with pain is one of the most difficult parts of living with the disease. Effectively treating pain requires finding its source, which isn’t always straightforward. A variety of medications and therapies can relieve pain for Gaucher patients, although certain painkillers carry a high risk of addiction. A Gaucher specialist can… Read More »

Topics: About Gaucher Disease, Gaucher Disease Treatment

Stay in Touch with NGF

Learn about the latest research, news and events.