Hereditary Haemorrhagic Telangiectasia ( HHT or Rendu Osler Weber disease) is fairly rare and therefore relatively unknown.
As a consequence, doctors often have little experience or knowledge of the disease. It is a complex disorder involving both a genetic susceptibility and other internal or external (environmental) factors.
This site provides up-to-date information about HHT for patients, relatives and medical professionals who are involved with HHT. The site has been updated in January 2010. Several new items have been added: thrombosis, genealogy ( pedigrees), in vitro fertilisation ( IVF ), life expectancy, social worker, common questions, available information booklets, newsletter and a site to give us your e-mail address. This might be useful to send you the invitation for the information days for patients, to inform you about trials and asking for volunteers and to spread the newsletter.