HHT (Osler, Weller, Rendu) is rampant in my husband's family.
My husband has suffered from the anemia from bleeding spots in intestines and nose bleeds for many years and is now under the care of the HHT Center at North Carolina Medical Center. He is undergoing treatment with Avastin, and it seems to be helping. Many advances in the treatment of HHT have been made in the last few years. Hopefully no one will have to bleed to death ever again, as my husband's grandmother, great uncle and great aunt did.
Our daughter and grandson also have been diagnoses with HHT. My husband's mother, grandmother, several great aunts and uncles, and many cousins have suffered from this.
There is an international DNA/genetic study going on now to map the mutations. Our family has been enrolled in the study. If you are interested in participating in this study, contact your nearest HHT Center. The list of clinics is available on the website: http://curehht.org/