Mission: Hht international, inc. Is a not-for-profit organization organized to provide information about hereditary hemorrhagic telangiectasia (hht) to patients, family members and physicians; operate as a support group for patients and family members; raise funds for basic and clinical research; and sponsor research grants for studies relating to hht.
Programs: Education - the goal of the education program is to promote education, diagnosis, and best practice treatments related to hht through its support of conference, meetings, and comprehensive hht clinical centers of excellence.
public information - the goal of the public information program is to increase public, private and governmental awareness of the hht disorder through the press and media.
research - the research program is supportive in funding research, in understanding the mechanism of hht disease, novel therapeutic approaches to treatment and management, and translational research.
advocacy - the goal of the advocacy program is to advocate for and support those with hht by pursuing recognition and funding.
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.
