Abetalipoproteinemeia Collaboration Foundation is formed as an Ohio non-profit Corporation January 12, 2007 In December 2006, Susan and Kent Arnold’s six-month old daughter Courtney was diagnosed with Abetalipoproteinemeia. In trying to learn more about this very rare genetic disorder, it quickly became apparent that there was no single “clearing house of information” on this condition.  As the Arnold’s tried to sort through the scattered information available on the web more questions surfaced than answers.   Questions such as: how many people have the condition?  Our there any standard treatment and testing protocols? What research in currently being conducted?    Who are the medical experts treating patients regionally and globally?  With a strong sense that they could do something to bring organization and structure to the pursuit of globally linking the  Abeta patients and their families as well as the treating physicians and researchers, the Arnold’s reached out to Jean Campbell at NORD for suggestions.  Through this process the Arnold’s learned about the many other organizations dedicated to rare diseases which were started as grass-roots efforts by the families of those affected.  Several organizations were contacted and the information exchange began.  “We are enthusiastic that in fact there is something we can do to improve the quality of life for our daughter and for those affected with the condition” said Susan Arnold. “We look forward to uniting with other families and professionals on this journey.  There are a number of organizations after which we can model ourselves and we believe this is the first step”.