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Having a complex condition doesn't always mean giving up a full, active life. There are many great organizations dedicated to helping support those living with Gaucher's Disease and other illnesses. The references are provided as resource for finding information on your illness, treatment options, support groups, clinical trials and more. The information is not intended to be used in lieu of medical advice from a qualified physician.
Support Links For Those Living With Gaucher's Disease.
The following organizations provide more information on Gaucher's Disease and support for people living with Gaucher's Disease.
National Gaucher Foundation
Medline Plus - A service of the U.S. National Library of Medicine
National Institute of Neurological Disorders and Stroke
Massachusetts General Hospital – Neurology Service
Children’s Gaucher Research Fund
Resource & Support Materials:
Weekly Medication Schedule
Clinical Trials and Medical Research.
A clinical trial is a rigorously controlled test of a new drug or a new invasive medical device on human subjects. In the United States, it is conducted under the direction of the FDA before being made available for general clinical use. If you're looking for up-to-date information about federally and privately supported Gaucher's Disease clinical research studies, ClinicalTrials.gov helps link patients living with Gaucher's Disease to medical research.
Financial Support For People Living With Gaucher's Disease.
When you're living with Gaucher's Disease, the expense of on-going treatment can sometimes become more than you'd planned. There are places to turn for financial support.
Medicare Prescription Drug Coverage
Starting January 1, 2006, Medicare will offer new prescription drug coverage. This new coverage can provide help with your drug costs, no matter how you pay for your drugs today.
Everyone with Medicare can join a drug plan to get this coverage. And, everyone with Medicare must make a decision about his or her drug coverage. That's why it's important that you read The Medicare Handbook to learn the basics about how the new drug coverage can work for you, based on the type of coverage you currently have. Pay special attention to the information in Section 6 of the handbook about Medicare's new prescription drug coverage.
Source: The official U.S. Government Site for People with Medicare Visit the official Medicare website for current information regarding the Medicare Prescription Drug Benefit and information that will help you make a decision on your new Medicare coverage.
Programs From Gaucher's Disease Drug Manufacturers
The following is a list of some drug manufacturers that offer financial assistance programs for people living with Gaucher's Disease who cannot afford to buy the medications they have been prescribed. You are encouraged to call these manufacturers directly for more information on these programs. If you need financial assistance for a drug not listed here, please contact one of our pharmacists.
| Drug Name | Manufacturer | Telephone Number |
| Cerezyme |
Genzyme |
1-800-745-4447 |
| VPRIV |
Shire |
1-866-888-0660 |
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