July 1st, 2009: HHT Clinical Guidelines Click Here The first International Guidelines for the Diagnosis and Management of HHT are now available on line at the Journal of Medical Genetics. This comprehensive document details international recommendations for the diagnosis of HHT and for related AVMs, by organ.  It also details recommendations for management of themulti-system manifestations of the disorder.   The HHT Guidelines were developed with experts from 13 countries, using  AGREE methodology for pre-meeting evidence search, retrieval and abstraction, and GRADE methodology for the recommendation development process. The guidelines development process also involved HHT patients.  HHT is a not-so-rare (1/5000) autosomal dominant disease which unfortunately remains under-diagnosed and under-treated.  The development and publication of these evidence-based consensus guidelines are the first step towards improving the standard of care for HHT patients.

June 17th, 2009: Please contact your Congressperson about House Resolution # 536 as soon as possible! Trish Linke has posted an important message on the Discussion Forum so  please Click Here and follow the instructions!

May 18th, 2009:The HHT Foundation is thrilled to report that  Senate Resolution #161 (formerly #141) has been passed by the United States Senate.  This Resolution was sponsored by Senator Tim Johnson of South  Dakota and cosponsored by Senator Robert Bennett, of Utah.

We are grateful to both Senators for their leadership on this issue and to our HHT community for your advocacy on behalf of HHT families. [Read more]

North American Vascular Biology Organization is hosting Genetics and Genomics of Vascular Disease Workshop in Hyannis, Cape Cod, MA on Setpember 13-16, 2009. The workshop will be interdisciplinary, allowing researchers in vascular biology and genetics/genomics to come together in a common focus to address important issues in vascular disease. The Jeffrey A. Blevins Memorial Fund, through the HHT Foundation, is a significant sponsor of this event. Click Here to learn more or register for this event.

Yale HHT Center of Excellence will be hosting their own one-day patient conference on October 24, 2009 in New Haven, CT. For more information and to register online, Click Here . Please direct all inquiries about this event to the Yale HHT Center.

Order your HHT Tribute Greeting Cards to recognize loved ones in a very meaningful way during the holidays or special personal occasions while supporting the HHT Foundation.

Click here to read more about the HHT/CDC Conference, “HHT Health Initiative for the 21st Century,” held on March 5-6, 2008 in Atlanta.

Thalidomide and gastrointestinal bleeding: A research study is recruiting HHT patients who have gastrointestinal bleeding and require blood transfusions. This study will determine whether thalidomide reduces the need for blood transfusions . Contacts: Atul Kumar, MD 631-261-440 ext. 5765 or Jim Gossage, MD 706-721-6791. Please click here for the link to the study.

HHT partners with NDRI for tissue donation.

Learn how YOU can support current events to benefit HHT

HHT Patients Needed for Mayo Clinic Study

HHT Foundation International

We are the only non-profit organization dedicated to finding a cure, the best available treatment, and education to the medical community and to those with Osler-Weber-Rendu Syndrome. The Foundation currently has over 2000 paid members and has been contacted by over 7000 individuals since our founding in 1991.

OUR MISSION is to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT.

To achieve this mission, the HHT Foundation will :

1. Fund research to find better treatments and a cure.
2. Educate families and physicians about HHT so that awareness of crucial diagnosis and available treatments prevents needless disability and death.
3. Provide linkages among people affected by HHT.
4. Collaborate with multidisciplinary HHT Treatment Centers worldwide while advocating for patient access to these Centers.
5. Advocate for and support those with HHT while increasing public, private, and governmental awareness of the disorder.
6. Engage the scientific and medical community so that talented individuals dedicate efforts toward advances in HHT screening, diagnosis, treatment, and research.

HHT Foundation International, Inc. P.O. Box 329 Monkton, MD 21111 USA 1-800-448-6389 410-357-9932 (Outside U.S.) FAX: 410-357-0655 This e-mail address is being protected from spam bots, you need JavaScript enabled to view it