The Gaucher Registry is an observational registry that collects and analyzes clinical data on individuals with Gaucher disease. The goal of the registry is to enhance the understanding of the natural history of Gaucher disease as well as the clinical response to enzyme replacement therapy. Medical Guidelines for monitoring individuals with Gaucher disease have been established as a part of the Gaucher Registry. These recommendations are offered to assist physicians in managing and evaluating individuals with Gaucher disease. The Gaucher Buddy Program is an informal network of individuals with Gaucher disease and their family members.
Buddies provide mutual support through the sharing of experiences.
Genzyme can assist in matching individuals with a Gaucher buddy. The National Gaucher Foundation or NGF provides support services to individuals with Gaucher disease and their family members. In addition, the NGF works with physicians and researchers to increase the scientific and medical understanding of this disease. The International Patient Advocacy Association is dedicated to providing individual resources and support for those affected by Gaucher disease.