Original Published: January 10, 2009
Revision: August 8, 2009
Website ShortVersion: Oct 25, 2009
This note describes how your medical
information, personal information or your photograph may be used.
We care about your privacy.
Your privacy is important to us and
it will be treated with the highest degree of confidentiality. Our mission is to provide awareness to the
world about girls and women who have bleeding disorders and hemophilia.
The stories that you write about
your journey with your bleeding disorder (or hemophilia) are to provide
awareness to the world that you exist and what you are going through is
real. Many people, including medical
providers, do not understand that girls have bleeding disorders (or
hemophilia). There is a great deal of
confusion in the medical community about girls who experience bleeding
episodes.
In addition, many girls who have these
disorders are isolated and would benefit from knowing they are part of a larger
community that shares their interests and concerns. That is why MyGirlsBlood , non-profit was formed.
We can share much of this important information without
using full names or real photographs.
We want to emphasize that we are
committed to maintaining the privacy of this information in accordance with the
law.
The information you share on Facebook is your
responsibility (photo, diagnosis, conversation with others).
The information on our website requires your written
consent (or an e-mail from you) prior to being posted.
You may remove your consent, and ask to have the information,
photo, etc removed at any time by simply sending an email to: mygirlsblood@yahoo.com.
Contact Information
Contact information for filing a
complaint, exercising privacy rights, or obtaining further information about MyGirlsBlood , non-profit Privacy
Policies:
HIPAA Privacy Contact
Cheryl D'Ambrosio
c/o MyGirlsBlood
P.O. Box 1223
Mercer Island, WA 98040
