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Patient
Resources
As
with most rare diseases, getting the care and support you
need can be challenging. In order to receive the best
care possible, you must become your own healthcare advocate.
The objective of this section is to help you find the resources
and information you will need to be successful.
GAP - Grassroots Awareness Program
The primary function of GAP
is to bridge the communication gap between patient and physician.
Each
packet will include our brochure, an
FMD Facts
pamphlet, recent medical literature,
FMDSA contact information, FMDSA pens, and FMDSA post-it notes.
This packet will help both you and your physician better understand
FMD and find the resources need to develop a treatment program.
For
more information, please contact FMDSA at (330) 653-8416 or
by email at admin@fmdsa.org
General Support
Medical Dictionaries
One
of the primary tools you will require as you learn more about
FMD is a health dictionary. You will run across many
medical terms that will be new to you. This link has
a number of dictionary resources to help.
US News - Best Hospitals 2006
How
does your hospital rank and where will you receive the best
care.
Online Medical Information
- Research
healthfinder
This
site is operated by the US Dept. of Health and Human Services.
This is one of the most comprehensive sites on the web for
patient information.
eMedicine
Launched
in 1996, www.eMedicine.com comprises the largest and most
current Clinical Knowledge Base available to physicians and
other healthcare professionals.
VascularWeb
This
site is provided by the Society for Vascular Surgery.
This link will lead you to some very helpful information of
tests and treatments that are common to FMD patients.
The information is presented in a very user friendly manner.
National
Women's Health Resource Center, Inc.
Healthywomen.org
is the one-stop shop for women's health information on the
web. This site includes frequently asked questions and consumer
tips on fitness, nutrition and disease prevention.
Medline Plus
MedlinePlus
has extensive information from the National Institutes of
Health and other trusted sources on over 650 diseases and
conditions. There are also lists of hospitals and physicians,
a medical encyclopedia and a medical dictionary, health information
in Spanish, extensive information on prescription and nonprescription
drugs, health information from the media, and links to thousands
of clinical trials.
Disease
Conditions
Medical
Resource for all diseases and conditions information - cancer,
neurological disorders, birth defects, AIDS, alzheimer's.
Health Organizations
NORD - National
Organization for Rare Disorders, Inc.
The National Organization
for Rare Disorders (NORD), a 501(c)3 organization, is a unique
federation of voluntary health organizations dedicated to
helping people with rare "orphan" diseases and assisting
the organizations that serve them. NORD is committed to the
identification, treatment, and cure of rare disorders through
programs of education, advocacy, research, and service.
National
Stroke Association
The
National Stroke Association (NSA) provides education, services,
and community based activities in prevention, treatment, rehabilitation
and recovery. Their site provides some very informative
patient information on stroke.
American Stroke Association
The
American Stroke Association is a division of the American
Heart Association and offers a wide array of programs, products
and services, from patient education materials to scientific
statements.
thekidney.org
It's
the first digital community for physicians and healthcare
professionals involved in the diagnosis and management of
conditions that affect the kidney. It's designed to
grow and evolve to help speed the communication of new treatment
options, provide a platform for scientific discussion, and
support physicians in day to day practice.
National
Kidney Foundation
The
National Kidney Foundation, Inc., a major voluntary health
organization, seeks to prevent kidney and urinary tract diseases,
improve the health and well-being of individuals and families
affected by these diseases, and increase the availability
of all organs for transplantation.
American Association of Kidney Patients
American Association of Kidney Patients (AAKP) exists to serve
the needs, interests and welfare of all kidney patients and
their families. Its mission is to improve the lives of fellow
kidney patients and their families by helping them to deal
with the physical, emotional and social impact of kidney disease.
The
Goddess Fund
The
Goddess Fund was created with one clear and compelling goal:
to eliminate the impact of stroke in women's lives, the lives
of their families and society at large.
Angel
Flight
Angel
Flight is a non-profit charitable organization created by
a group of pilots to arrange free air transportation for any
legitimate, charitable, medically related need. This
service is available to individuals and health care organizations.
Government Resources
Medicare
The
official US government site for people who have Medicare benefits.
NIH
- Office of Rare Diseases
The
Office of Rare Diseases (ORD) was established in 1993 within
the Office of the Director of the National Institutes of Health
(NIH). On November 6, 2002, the President established the
Office in statute (Public Law 107-280, the
Rare Diseases Act of 2002).
A rare disease (also called an orphan disease) is a disease
or condition affecting fewer than 200,000 persons in the United
States. An estimated 25 million people in the United States
have a rare disease.
National
Institute of Diabetes and Digestive and Kidney Diseases
Part of the National Institutes of Health. This is the
Institute responsible for research of kidney disease.
Food and Drug
Administration
The
FDA is responsible for protecting the public health by assuring
the safety, efficacy, and security of human and veterinary
drugs, biological products, medical devices, our nation’s
food supply, cosmetics, and products that emit radiation.
The FDA is also responsible for advancing the public health
by helping to speed innovations that make medicines and foods
more effective, safer, and more affordable; and helping the
public get the accurate, science-based information they need
to use medicines and foods to improve their health.
FirstGov
for Consumers
Good
general health site with plenty of links to other government
sites.
National
Library of Medicine
The
National Library of Medicine is a resource provided by the
National Institutes of Health and is considered the most comprehensive
library of medical information.
Social Security Administration
Official
link to the Social Security Administration.
Health Insurance
Health Insurance (healthfinder)
This
site is operated by the US Dept. of Health and Human Services.
You will find helpful links to Medicaid and Medicare information
Medicare
The
official US government site for people who have Medicare benefits.
Social Security Administration
Official
link to the Social Security Administration.
Personal Links
Mel
Parker Songwriter
The
songs of Mel Parker blend the great traditional and classic
sounds with the soul of country, pop, rock and rhythm and
blues. A portion of the proceeds from the sale of this
CD go to the FMDSA. Click here and take a listen.
Kinetic
Muscles, Inc
KMI
was incorporated in May 2001. Based in Tempe Arizona,
KMI has developed the foundation for a line of products to
assist physical therapists with repetitive practice therapy
for stroke patients and other similar hemiplegic conditions.
Discover
Mobility
Discover
Mobility is a provider of products that help those with mobility
problems regain their freedom. Their innovative products
consist of Vans, Scooters, Electric Vehicles, Golf Carts,
and Durable Medical Products.
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