Your privacy is important to us. Below is a
summary of our privacy procedures, including issues of
Confidentiality and our Code of Conduct, so you know the way your
information is handled.
The ARPKD/CHF Alliance is firmly committed to the principle of
confidentiality of information for its activities and programs. The ARPKD/CHF Alliance has an ethical and legal obligation to respect
the privacy of all participant information. Your information will
never be sold, rented or shared with another organization. Furthermore, this obligation extends to protecting and maintaining
the confidentiality of all information derived from surveys,
studies, databases, or organizational activities.
Procedures for Maintaining Confidentiality:
1. All individuals involved with ARPKD/CHF Alliance programs or
data, in any capacity, shall sign a legally binding
"Confidentiality and Code of Conduct Agreement", kept on file at
the ARPKD/CHF Alliance office.
2. Any data containing personal identifiers (names, etc.) shall be
kept in a secure area when not being used. Extreme caution shall
be exercised in limiting access to information to only those
persons who are working with the ARPKD/CHF Alliance, on a project
or as a part of other organizational activities, and who have been
instructed in the applicable confidentiality and code of conduct
requirements for the organization.
3. All individuals working with the ARPKD/CHF Alliance in any
capacity shall keep completely confidential the names of
individuals contained in any data files, including these
individuals’ affiliation or genetic condition. All information or
opinions, whether the information is learned directly or
incidentally, shall also be kept confidential.
4. The Alliance has review rights for any publication that may
result from surveys, data analysis, or other activities performed
using ARPKD/CHF Alliance information. "Publication" means a
written article or paper that will be presented at a meeting,
published in a journal, newsletter, or other widely circulated
Code of Conduct:
1. Our code of conduct standards are based on honesty,
integrity, fairness, respect, trust, responsibility, and
accountability in nonprofit program operations, governance, human
resources, financial management and fundraising. They go beyond
the minimum legal requirements by outlining how well managed and
responsibly governed nonprofits should operate.
2. The ARPKD/CHF Alliance expects ethical and businesslike conduct
from itself and its members, to preserve and enhance public trust
in the organization. Involved persons will deal with outside
entities or individuals, and with each other in a manner
reflecting fair play, high ethics and straightforward
3. This commitment includes proper use of authority, appropriate
decorum in group and individual behavior, and prevention of
problematic conflicts of interests.
The ARPKD/CHF Alliance links to other sites that may be of interest
to those who use our site. The Alliance is not responsible for the
privacy practices or the content of such web sites.