CFC International holds the world's largest collection of blood
and tissue from people affected by CFC and their immediate relatives.
It is the only centralized repository in the world. We are using
these samples to promote research to locate the gene(s) responsible
for causing CFC Syndrome. CFC International joined the Genetic
Alliance BioBank in 2004 to make certain that your privacy and
confidentiality are protected and your samples are available
to any approved research project. The creation of this bank will
serve as a resource for researchers around the world who are
willing to search to find the gene(s) responsible for the Cardio-Facio-Cutaneous
Syndrome.
If you decide to consider donating, we would like you to know
the following:
Privacy and Confidentiality:
CFC International can assure you that your privacy and confidentiality
are protected. We will remove your name and all other identifying
information and we will code your samples.
Opportunity to Participate in the Blood Bank:
Once you indicate your interest for this blood donation program
we will begin the informed consent process with you. You will
be given plenty of opportunity to ask questions. After you
freely consent, we will proceed with ordering your blood draw
kits/
There is No Cost to You!
Why is the CFC BioBank so Important to the Future of Cardio-Facio-Cutaneous
Syndrome?
The CFC BioBank provides medical researchers with genetic and
biological material from CFC patients and their families, so
that research on CFC and other related syndromes can be performed.
We've been hard at work with the families and their physicians
to gather these precious biological materials.
As you know, Cardio-Facio-Cutaneous Syndrome is an extremely
rare condition. Thus while access to cell lines is essential
for studying the biology and genetics of the disorder, there
are very few cell lines in existence. Because an integral part
of CFC's mission is to stimulate interest in CFC research, there
is an increased need for cell lines. The CFC BioBank will ensure
that need is met! The goals of The CFC BioBank are to promote:
- Sufficient availability of cells for approved research projects
- Incentive for new research projects
- Study of the biochemical
basis for CFC Syndrome
- Discoveries leading
to new treatments for children with CFC Syndrome
If you are interested in donating to the CFC BioBank please
call 607-772-9666, or e-mail us at bconger@cfcsyndrome.org and
indicate your interest. Researchers with an interest in either
donating CFC Syndrome cell lines or in applying to use material
from the bank should also call or write.
Thank you for considering participation in the Cardio-Facio-Cutaneous
International BioBank.
Sincerely,
Brenda Conger
President
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