The Osteogenesis Imperfecta Foundation, Inc. (OI Foundation) is the only voluntary national health organization dedicated to helping people cope with the problems associated with osteogenesis imperfecta. The Foundation’s mission is to improve the quality of life for people with OI through research to find treatments and a cure, education, awareness, and mutual support.

Vital to this mission is the Foundation’s manner of doing business in an open, responsible, and accountable way.  It is the Board of Directors and the employee team’s belief that organizations benefit from working with their constituents’ in an open dialog, as well as through realistic organizational monitoring and constructive correction.  The Board and management team of the OI Foundation treat their fiduciary responsibility very seriously. That includes:

  • Open communication on all Foundation activities,
  • Accountability and professionalism that would be exemplary in any organization,
  • A willingness and openness toward conducting activities in more effective ways, and
  • Adherence to governance guidelines promulgated through both the BBB-Wise Giving Alliance Standards for Charitable Accountability and the National Health Council (NHC)’s Good Operating Practices.

The mission and activities of the Foundation should be transparent and easily understood by all those interested in or affected by osteogenesis imperfecta.  The very few exceptions to this relate to constituent medical or personal information, information that donors wish to keep confidential, and employee information (such as individual salaries or performance reviews – which are instead vetted by the independent, volunteer Board of Directors and respective governance committees).

Ethical issues will arise in the use of different aspects of science and medicine in the treatment, and hopefully cure, of OI.  The Foundation’s policy is to help with understanding the impact of the various aspects of these treatments. Unless there is a clear consensus, (through the scientific and member base) about a particular issue, the Foundation will be a force for understanding and communicating the issues involved in these important debates, not an advocate for one side or the other.  The transparency that the OI Foundation seeks will be better served through the organization laying out all sides of an ethical debate.

Concerns about any aspect of the OI Foundation’s accountability, performance or policy consistency may be directly addressed to either the President of the Board, individual Board members or the Executive Director of the Foundation.  Any relevant concern will engender corrective action which will in turn be thoroughly communicated back to OI constituents.