Our Privacy Policy

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.

Confidentiality:
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 periodical.

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 communication.

3. This commitment includes proper use of authority, appropriate decorum in group and individual behavior, and prevention of problematic conflicts of interests.

Other Sites:
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.