HHT Foundation International » Brain AVM http://hht.org Hereditary Hemorrhagic Telangiectasia - Osler-Weber-Rendu Wed, 01 Feb 2012 22:16:19 +0000 en hourly 1 http://wordpress.org/?v=3.3.1 HHT Awareness Video http://hht.org/2012/01/hht-awareness-video/ http://hht.org/2012/01/hht-awareness-video/#comments Fri, 27 Jan 2012 19:54:45 +0000 nicole http://hht.org/?p=2942 The HHT Foundation is proud to announce our first HHT Awareness initiative .... the video production More Than A Nosebleed: HHT. We all have our own HHT story and path to diagnosis but Bernstein-Rein, an advertising agency, through patient stories and the medical expertise of three HHT Center of Excellence Directors, has created the most powerful media piece the HHT Foundation has ever created. We encourage you to watch the video -  it is quite compelling.

As members of the HHT community, you have been asking us to help get the HHT word out to the public at large. The HHT Foundation has taken action by producing this video and the associated toolkits on our website. Increasing HHT awarenss is critical to advancing HHT research and therapies, public and medical professional outreach, and physician education.

Now, it is your turn to Take Action!  We need you to spread the word about HHT by:

1.  Watching the video
2.  Passing the video link, http://video.hht.org,  on to your family, friends, local media, and social media sites
3.  Contacting your congressional members
4.  Utilizing the toolkits and resources available on the HHT Foundation website
          Fundraising Toolkits and Ideas
          Press and Media Toolkits
          Legislative Toolkit

All uses of this video, More Than a Nosebleed: HHT, are to benefit the HHT Foundation International, Inc. and all of the families that we support around the world. To maximize the return on our investment, we need your participation  in this Awareness Campaign.

WE WANT TO HEAR FROM YOU! Send a message to Cathleen Kinnear and let us know (1) how the video impacted you; (2) how you have used the video to educate more people about HHT; (3) what ACTION you have taken to increase HHT awareness.

Everyone at the HHT Foundation - Board of Directors, Executive Director, and staff - is excited about the opportunities that will present themselves through this HHT Awareness Campaign. Join us in spreading the word about HHT so we can turn hope into reality... A cure for HHT!

]]> http://hht.org/2012/01/hht-awareness-video/feed/ 0 HHT Research Studies Expanding http://hht.org/medical-scientific/researchstudies/ http://hht.org/medical-scientific/researchstudies/#comments Mon, 28 Nov 2011 21:26:58 +0000 nicole http://hht.org/?p=2794 The NIH-funded BRAIN AVM Study has expanded to include remote protocols for qualified patients who are not affiliated with a participating HHT Center. The NOSE STUDY is now recruiting qualified patients at 4 HHT Centers. We need you to help advance HHT research - see what is involved and how you can participate!

]]> http://hht.org/medical-scientific/researchstudies/feed/ 0 Brain AVM Multiplicity Predicts the Diagnosis of HHT http://hht.org/about-hht/important-articles/ http://hht.org/about-hht/important-articles/#comments Fri, 11 Nov 2011 16:45:36 +0000 nicole http://hht.org/?p=2757 A recent article published in Stroke, a Journal of the American Heart Association, shows that the presence of multiple brain AVMs is highly predictive of the diagnosis of HHT. Two large North American brain AVM referral centers comined their databases to compare patients with HHT and non-HHT patients.

]]> http://hht.org/about-hht/important-articles/feed/ 0 HHT Regional Conference http://hht.org/living-with-hht/patient-and-family-conferences/ http://hht.org/living-with-hht/patient-and-family-conferences/#comments Wed, 19 Oct 2011 15:49:47 +0000 nicole http://hht.org/?p=2739 Physicians and Patients are strongly encouraged to attend this one-day event on Saturday, November 5th in Dallas, TX. You won't want to miss the latest HHT treatments and research, participation in the Brain AVM Study, receipt of 7.5 CME credits for health care professionals, networking, and much more.

]]> http://hht.org/living-with-hht/patient-and-family-conferences/feed/ 0 NIH Brain AVM Study http://hht.org/medical-scientific/researchstudies http://hht.org/medical-scientific/researchstudies#comments Fri, 23 Sep 2011 19:26:51 +0000 nicole http://hht.org/?p=2717 The ONLY requirement for participation.... You MUST be clinically or genetically diagnosed with HHT! Come to the Regional Conference in Dallas, TX on November 5th or call the HHT Foundation to participate in this ground breaking research!

]]> http://hht.org/medical-scientific/researchstudies/feed/ 0 UNC at Chapel Hill 12th HHT Center in U.S. http://hht.org/2011/03/unc-at-chapel-hill-12th-hht-center-in-u-s/ http://hht.org/2011/03/unc-at-chapel-hill-12th-hht-center-in-u-s/#comments Mon, 14 Mar 2011 15:41:39 +0000 nicole http://hht.org/?p=2502 The HHT Foundation is excited to annouce a new partnership with the University of North Carolina at Chapel Hill. Dr. Raj Kasthuri, Director, has  team of HHT physicians/specialists that have been treating HHT patients for several years and they are ready to serve you and your family.

Dr. Raj Kasthuri, assistant professor of hematology and oncology in the UNC School of Medicine, is director of the new HHT Center and is a member of the UNC Hemophilia and Thrombosis Center (HTC) as well as the UNC McAllister Heart Institute.

In 2008, Dr. Kasthuri attended the CDC meeting, ‘HHT Health Initiatives for the 21st Century’ as a representative of the HTC community. As a hematologist, Dr. Kasthuri was convinced that he had HHT patients that were undiagnosed. He returned to UNC with a passion for HHT and immediately began speaking with Dr. Gossage, Medical Director for the HHT Foundation, to learn more about HHT and what was required to become a center of excellence.  Since that time, Dr. Kasthuri, and several of his staff members, have visited and received training from the Medical College of Georgia and Yale University. In addition, Dr. Kasthuri’s expertise in anemia and iron deficiency has become a valuable resource to other HHT Centers.

“Dr. Kasthuri has organized a team of specialists at UNC at Chapel Hill who are knowledgeable in the treatment and care of HHT. We are really excited about this new collaboration,” said Marianne Clancy, executive director of the HHT Foundation International.

Print UNC at Chapel Hill Announcement Flyer

Link to a full list of  national and international HHT Centers of Excellence

]]> http://hht.org/2011/03/unc-at-chapel-hill-12th-hht-center-in-u-s/feed/ 0 HHT RECEIVES FUNDING FOR BRAIN AVM RESEARCH http://hht.org/2010/01/hht-receives-funding-for-brain-avm-research/ http://hht.org/2010/01/hht-receives-funding-for-brain-avm-research/#comments Sat, 23 Jan 2010 20:11:30 +0000 ccakins http://hht.org/?p=1082 OCTOBER 6, 2009 - The National Institutes of Health just announced a second phase of funding for the Rare Diseases Clinical Research Network (RDCRN). This research award will be funded over the next five years. Originally launched in 2003, the RDCRN addresses rare diseases through consortia and supports related to natural history, epidemiology, diagnosis, and treatment.

The HHT portion of the study will include 13 HHT Centers participating for 5 years. 875 patients will be recruited through HHT Centers and the HHT Foundation Conferences. The study's aims will:
-include demographics, symptomatology, cerebral angioarchitecture, other organ involvement
- Determine risk factors for hemorrhage HHT BAVM.
- HHT Brain AVM's will be compared against sporadic Brain AVM's
- Determine high risk interventional therapy
-Investigate the use of genetic mutations as potential marker for hemorrhage risk (Endoglin, Alk 1)

The full announcement of the award can be found:
http://www.nih.gov/news/health/oct2009/od-05.htm

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