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| ACF is an Ohio non-profit corporation, which endeavors to create an international network of those, diagnosed with Abetalipoproteinemia and related disorders as well as their families, treating physicians and researchers. Through this organization, our goal is to raise and appropriate substantial funding for research and treatment as well as pursue a number of other initiatives to improve the quality of life for those with this disorder. In addition to corresponding with NORD, we have been networking with a number of other Rare Disease Foundations that have gone through a similar startup process. |
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"We set sail on this new sea because there is knowledge to be gained."
John F. Kennedy |
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i. Create a Scientific Advisory Board consisting of the world’s foremost experts in the medical fields related to the condition
ii. Set up a web-based discussion forum area
iii. Hold various meetings and conferences throughout the year
iv. Identify all the stakeholders (physicians, researchers and patients)
v. Raise funding to support the Foundation and it’s initiatives
vi. Approve and fund various research initiatives
vii. Establish a Patient Registry
viii. Create an online library with all of the published reports on the condition in a “keyword searchable” manner
ix. Establish testing and treatment protocols
x. Identify and support one or more specialty research and treatment centers (on a global basis) who are committed to testing and treatment of the condition as well as research
xi. Assist in various patient services issues such as insurance matters
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