My Nonprofit Reviews

This organization serves people who suffer from HHT. Without this foundation there would not be Centers of Excellence, medical facilities that provide many different types of medical care to HHT patients. Without the foundation there would not be any research that is currently being conducted and some being planned to find better treatments, determine the causes of this condition and hopefully one day a cure. I do not know what condition I would be in if I did not find the foundation online and through the foundation the doctors and the treatments that allow me to lead a normal life. HHT is a condition that is not rare, is genetic and is vastly under-diagnosed. Approximately 1 in every 5,000 people inherit this condition, but only 10% of those are diagnosed with it. Medical professionals are not aware and do not know enough to realize when their patients have this and often treat them inappropriately and sometimes the treatments are dangerous. This has happened to me a number of times, but now I can contact the foundation or my specialist and find out if my other doctors have given me something helpful or unhelpful.

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