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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 Hemophilia 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 Hemophilia.
The following organizations provide more information on Hemophilia and support for people living with Hemophilia.
National Hemophilia Foundation - HANDI
Hemophilia Federation of America
National Heart, Lung and Blood Institute
Hemophilia Treatment Centers
World Federation of Hemophilia
Medline Plus - A service of the U.S. National Library of Medicine
Hemophilia Treatment Centers.
Having a chronic disease means spending a lot of time and energy negotiating the healthcare system. The National Hemophilia Foundatino established a nationwide netork of hemophilia diagnostice and treatment centers with the goal of providing a range of comprehensive services for patients and families within one treatment facility. The concept of comprehensive care is to treat the whole person and the family, through continuous supervision of all the medical and psychosocial aspects of bleeding disorders. Comprehensive care is total care because every facet of the person is addressed, including their physical, emotional, psychological, educational, financial and vocational factors. Visit the Hemophilia Treatment Centers page on the CDC website for an up-to-date directory. Here are some of the Free publications available to members at NHF resources:
Hemophilia Sports and Exercise
Caring for Children with Hemophilia
Guidelines for Finding Childcare
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 Hemophilia clinical research studies, ClinicalTrials.gov helps link patients living with Hemophilia to medical research. In addition, it is helpful to contact your Hemophilia Treatment Center. They can also provide information on the latest clinual trials and where those trials are taking place.
Financial Support For People Living With Hemophilia.
When you're living with Hemophilia, the expense of on-going treatment can sometimes become more than you'd planned. There are places to turn for financial support. One place to turn is your local hemophilia treatment center and local associations. A social worker will be able to provide information on financial resources and helpful ways to navigate the reimbursement process.
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.
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