The HHT Foundation International, Inc. continues to promote education, diagnosis, and best practice treatments related to Hereditary Hemorrhagic Telangiectasia (HHT) through its support of conferences, meetings, and comprehensive HHT Clinical Centers of Excellence. Programs supported by the HHT Foundation exist on regional, national, and international levels. Commitment to advancing initiatives in scientific research and education of clinicians is central to our mission. Our achievements in these areas during 2003-2006 were possible largely thanks to the support and generosity of our members and from grants received from John Abele on behalf of The Argosy Foundation.

HHT/CDC Conference, “HHT Health Intiative for the 21st Century”
March 5-6, 2008
Atlanta, Georgia

To view specific information about the conference, please click on the links below:
HHT/CDC Conference Introduction
HHT/CDC Conference Program
HHT/CDC Goals and Objectives

Clinical Practice Guidelines for Hereditary Hemorrhagic
Telangiectasia: November 15-16, 2006
Toronto, CA

The Consensus Development Conference consists of a group of experts in the field of HHT brought together to work collaboratively with professional facilitators to improve diagnosis and treatment of HHT. The goals of the conference are to review existing evidence on specific medical issues in a systematic fashion, to obtain expert consensus where scientific evidence is lacking, and to synthesize recommendations for Practice Guidelines

Specific Objectives:

1. To revise the existing Clinical Practice Guidelines for the diagnosis of HHT (Curacao Criteria) by incorporating the utilization of molecular genetic testing.
2. To develop Clinical Practice Guidelines for the diagnosis, screening, and treatment of the major areas of clinical concern in HHT, including chronic epistaxis (nosebleeds), pulmonary arteriovenous malformations (AVMs), hepatic vascular malformations, cerebral AVMs, gastrointestinal bleeding, and skin telangiectases.
3. To develop materials for and approaches to dissemination of the Clinical Practice Guidelines for health professionals. Examples include peer-reviewed publications, a site on the HHT Foundation International web page, and a multimedia presentation that would be available to individuals or educational and training programs that wish to teach about HHT.
4. To develop recommendations for research priorities that will continue to improve the quality of evidence upon which the Clinical Practice Guidelines are based

Outcomes:

At the conclusion of the Consensus Conference, the following will be identified and established:

1. Clinical and genetic criteria by which a definitive diagnosis of HHT can be made
2. Criteria for diagnosis and treatment of the most common symptoms and organ manifestations of HHT, including chronic nosebleeds, GI bleeding, pulmonary and cerebral AVMs, and liver vascular malformations.
3. Protocols for routine follow-up by primary care and specialty physicians.
4. Protocols for treatment of acute episodes.
5. Recommendations for publication and broad distribution of Consensus findings and HHT Standard Practice Guidelines, and presentation at scientific and professional symposia.
6. Strategies developed for implementation of the Practice Guidelines as the standard of practice and for assessment of the impact of Practice Guidelines on physician behavior and HHT care in North America.

Advanced Course for the Diagnosis and Treatment of Hereditary Hemorrhagic Telangiectasia (HHT) For Otorhinolaryngologists, Radiologists, and Gastroenterologists

Yale University School of Medicine
New Haven, Connecticut
June 28-30, 2004

One of the most important accomplishments during the session was the sponsorship of two multidisciplinary courses, one hosted at the University of Bari, Bari, Italy, December 3-5, 2003 and the second at Yale University, New Haven, CT, and June 28-30, 2004. Supported by funding from The Argosy Foundation, these conferences brought together European and North American physicians from multiple specialties.

On June 28-30, 2004, an advanced course on HHT diagnosis and treatment for Ear Nose and Throat, Interventional Radiologists and Gastrointestinal specialists was held in New Haven, CT, under the auspices of the HHT Foundation supported by funding from the Argosy Foundation. Using the format developed for the European course, the New Haven course included both general and technical didactic sessions on the first day, and the presentation of live clinical cases on the second day. The faculty treated patients requiring septal dermoplasty for the management of epistaxis (nosebleeds), embolization for the treatment of pulmonary arteriovenous malformations (PAVM), and small bowel and capsule enteroscopy for gastrointestinal bleeding with direct observation by participants. These case demonstrations exemplified the exceptional clinical experiences that provided physicians techniques for treating HHT patients with multi-system problems.

The first conference for European otorhinolaryngologists (ENT), interventional radiologists (IR), and gastroenterologists (GI) took place in Bari. There were 50 participants from 8 countries. President Giovanni Girone of the University of Bari and Governor Raffaele Fitto of Apulgia delivered the opening remarks. The course focused on diagnosis and treatment of HHT through in-depth seminars and practical clinical sessions. The program was an overwhelming success, as evidenced by press and television coverage and the appended letter from Governor Fitto. Comments from the participants and faculty were favorable and were incorporated into the planning of the North American conference held in June. A Center of Excellence in Spain was formed as a direct result of this conference.

A total of seven faculty and twenty-five specialists participated. University and local press coverage were instrumental in raising public awareness about HHT and the current advancements in diagnosis and treatment.