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OUR PURPOSE An
additional element was needed to meet
the needs of the patients. Consequently
in 2002 a patient association was established to meet
three
objectives. 1.
To improve information available to patients and relatives.
This
association will help direct those in need of resources and information
related to familial cardiomyopathy.
This web site will provide a basic explanations of the more
common familial diseases
for further research the patient will find links to help other web sites
2.
To facilitate communication between patients and medical staff.
The
association will serve as a form for members to communicate among
themselves and raise concerns that
are particular to their set of circumstances.
Many times, simply getting in contact
with
fellow patients and sharing experiences can be a rewarding and
reassuring experience. The
message
board
on this web site is the vehicle that will be used. 3.
Support research groups.
Familial
cardiovascular conditions are usually treated but not cured.
The research done at the CU-CVI
Cardiovascular
Genetics Clinic provides hope for better understanding of the
disease and ultimately a
cure for these diseases.
This association acts as an advocate for the clinic and to
assist in future funding
needs. More details on the origin of the patient association can be found in our first newsletter. (click here). |
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