Resources- Specific Diagnosis Card Catalog- Gaucher Disease
Who to Contact
National Gaucher Foundation
5410 Edson Lane, Suite 260
Rockville, MD 20852-3130
Toll-free: 800-428-2437
Phone: 301-816-1515
Fax: 301-816-1516
E-mail: ngf@gaucherdisease.org
Web: www.gaucherdisease.org
The National Gaucher Foundation (NGF) was established in 1984 as a non-profit, tax exempt organization dedicated to supporting and promoting research into the causes of, and a cure for Gaucher Disease. The mission of the NGF is to find a cure for Gaucher Disease by funding vital research programs, to meet the ever- increasing needs of patients and families, as well as to promote community/physician awareness and educational programs.
The NGF offers a variety of services and programs including regional chapter meetings, patient support groups, international conferences, as well as the CARE Program and the Care+Plus Program which provide critical financial assistance to individuals with Gaucher Disease. The NGF also publishes a quarterly newsletter featuring informative columns about exercise, medical questions, personal stories and research updates. There is a $35 membership fee which entitles members to a 12 month subscription to the Gaucher Disease Newsletter, discounts on conferences and seminar registrations, and all NGF publications and materials.
The NGF has funded millions of dollars in research dealing with various enzyme replacement therapies, alternative treatments and gene therapy. Currently, the NGF is funding ground-breaking research on the gene replacement therapy which would ultimately cure Gaucher Disease. Success in this research would lead the way to finding cures for hundreds of genetic disorders.
Where to go to Chat with Others
The Genetic Disease E-Mail Discussion Group
This discussion group is a means of networking and communication for individuals concerned with the genetically-transmitted diseases
Learn More About It
Living with Gaucher Disease
A guide for patients, parents, relatives, and friends
Gaucher Disease - What every family should know
From the National Tay-Sachs & Allied Diseases Association
Links
Gaucher Disease Treatment Program
Children's Gaucher Research Fund
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