Organized by Abetalipoproteinemia And Related Disorders Foundation
Help the ABL Plus Foundation support rare disease patients
The ABL+ Foundation advocates for and works to assist people affected by the ultra rare genetic diseases Abetalipoproteinemia (ABL), Familial Hypobetalipoproteinemia (FHBL), and Chylomicron Retention Disease (CMRD). These patient communities are very small and often underserved by the medical community. Proper diagnosis, espcially at a young age, is critical to proper treatment but because these illnesses are so rare patients are often misdiagnosed.
The treatments for these illnesses are strict adherance to an almost fat free diet, and very high doses of vitamins that can prevent serious health complications such as neuropathy and blindness. Unfortunatly insurance companies consider vitamins to be a dietary supplement and often refuse to cover them resulting in some patients spending thousands of dollars per year on their vitamins.
The ABL+ Foundation advocates for these patients in the medical community by working to raise awareness in the hopes of patients being properly diagnosed at a younger age. The foundation also works to provide proper information to insurance companies to urge them to provide coverage for the vitams our patients need.
A new study is being explored to find an easier way to measure vitamin E levels in patients with these diseases. This study may make earlier and less invasive diagnoses of these illnesses possible.
The pupose of this GoFundMe is to raise money for the following:
- Cover the annual cost of our website
- Cover annual fees and taxes related to being a nonprofit
- Fund research into finding new ways to diagnose and treat the illnesses the ABL+ Foundation is concerned about
For more information please visit ablplusfoundation.org
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