On June 23, 2012, the HHT Foundation announced the first-ever HHT Global Awareness Day. It is important that we collaborate with International Patient Groups, clinicians, scientists and patients every day of the year. This June, in celebration of June being HHT Awareness month, several activities have taken place. We have posted many patient activities. Now, we want to highlight a few events taking place in the medical and scientific community.
Related to the first HHT Global Awareness Day, an article was published by Paolo Pierucci et al. entitled "A long diagnostic delay in patients with Hereditary Haemorrhagic Telangiectasia: a questionnaire-based retrospective study". Orphanet Journal of Rare Diseases 2012 Jun 7;7(1):33 [Epub ahead of print], PMID: 226764972012. The provisional PDF is freely available on the website of Orphanet Journal of Rare Diseases. In this work, a retrospective study carried out in Italy showed that the time elapsing from the very first clinical manifestation to a definite HHT diagnosis spans almost three decades.
A similar study was conducted by Dr. Marie Faughnan et al. in Toronto, Canada. Their findings, which are in the process of being published, showed that the average diagnosis time from first visit to an ENT to a confirmed diagnosis is 13 years whereas the average is 14 years from first emergency room visit to HHT diagnosis.
HHT MEDICAL PRESENTATIONS
We are very excited to announce that presentations related to HHT will be delivered at scientific and medical conferences around the world over the next twelve months. Here are just a few:
The International Society for the Study of Vascular Anomalies (June 16-19, 2012)
Workshop: Vascular Anomolies
European Association for the Study of Liver (June 22-23, 2012)
Vascular Liver Disease
North American Vascular Biology Organization (October 14-18, 2012)
Workshop: Developmental Vascular Biology
Pacific Grove, California
Hemophilia and Thrombosis Research Society (May 2013)
HHT Invited Speaker
10th International HHT Scientific Conference (June 12-15, 2013)
Website will be available shortly
HHT awareness has greatly increased in recent years and is one of the HHT Foundation's primary focuses for the next several years. Through partnerships with professional associations, HHT clinicians and researchers are able to increase medical and scientific awareness. We anticipate that this type of education will help decrease the time delay in HHT diagnosis which will ultimately impact HHT patient care and quality of life.