Protected: 2016 HHT Conference Materials

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In the Know – HHT and Kids

Presenter

Madan-Khetarpal, SuneetaDr. Madan-Khetarpal is the Clinical Director of Medical Genetics, associate professor in the Department of Pediatrics and associate professor of Ophthalmology. She has been practicing for over 27 years with a special emphasis in birth defects as well as the diagnosis and management of a variety of hereditary connective tissue disorders, including HHT.

 

 

Webinar

Join Dr. Suneeta Madan-Khetarpal, Co-Director of the University of Pittsburgh HHT Center at Children's Hospital of Pittsburgh of UPMC, to discuss unique features of HHT in children. Through the family tree, these findings aid in diagnosing children with HHT earlier in life, resulting in more effective treatment. There will be time for Q&A after the presentation.

Webinar Highlights

  • Genetic testing protocols
  • Significance of family history in determining HHT
  • Review of several HHT cases

 

ACT NOW

  • SHARE this information and webinar link with your family members affected by HHT

Cure HHT

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. Beginning in May 2016, Cure HHT members will have access to unlimited webinars, discounted conference registration and much more. This is one of two webinars offered this year that will be available to everyone. Please consider joining or renewing your Cure HHT membership so that you can participate in all activities within the HHT community.

 community

ABCs of AVMs: Vascular Malformations of the Lungs and Brain in HHT

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Presenters

Conrad, Miles UCSFDr. Miles Conrad is Associate Clinical Professor in the Department of Radiology at UCSF and Co-Director of the UCSF HHT Center of Excellence.  Dr. Conrad received his MD from Dartmouth Medical School and his MPH from Harvard School of Public Health. He completed a Diagnostic Radiology residency and a fellowship in Interventional Radiology at University of Arizona. He specializes in the treatment of PAVMs.

 

Hetts, Steven UCSFDr. Steven Hetts is Associate Professor of Radiology, Co-Director of the UCSF HHT Center of Excellence and Chief of Interventional Neuroradiology at USCF Mission Bay Hospitals. Dr. Hetts graduated from Harvard Medical School, and completed a Diagnostic Radiology residency and fellowship in Diagnostic and Interventional Neuroradiology at UCSF

 

 

Webinar

Join Doctors Miles Conrad and Steven Hetts for a discussion on the diagnosis and treatment of brain arteriovenous malformations (BAVM) and an update on the latest lung AVM (PAVM) treatment followed by a Q&A period.

Webinar Highlights

 

ACT NOW

Cure HHT members will have access to unlimited webinars, discounted conference registration and much more. Please consider joining or renewing your Cure HHT membership so that you can participate in all activities within the HHT community.

community

 

 

CureHHT-Logo-Lockup-RGB

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. Beginning in May, Cure HHT members will have access to unlimited webinars, discounted conference registration and much more.

Pumping Iron in HHT

Presenters

Totonto Team - Ronalee Rbert Zhenxiu Cheng, Rose Pantalone Marie FaughnanThe webinar on Pumping Iron in HHT is being presented by 4 members of the multi-disciplinary team at St. Michael's Hospital, HHT Center in Toronto, Canada.

The team presenting tonight consists of Dr. Faughnan who has been working with HHT patients for almost 20 years and is the director of the HHT program.  Ronalee Roberts, team dietician; Rose Pantalone, HHT clinic nurse; and Zhenxiu Cheng, a nurse in the Medical Day Care where patients receive their iron.

Webinar

Join this team of experts from the HHT Center of Excellence at the University of Toronto/St. Michael's Hospital for a discussion of iron deficiency anemia in HHT.  Learn how to “pump iron” with the right diet, medications and treatments.

Webinar Highlights

  • Causes of anemia
  • Ways to increase iron supply
  • How to get the most out of the iron in your diet
  • Iron treatments and side effects
  • What are the risks/benefits of iron supplements and iron infusion
  • Handout - Pumping Iron in HHT

ACT NOW

  • SHARE this information and webinar link with your family members affected by HHT

Cure HHT

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. Beginning in May, Cure HHT members will have access to unlimited webinars, discounted conference registration and much more. Please consider joining or renewing your Cure HHT membership so that you can participate in all activities within the HHT community.

 community

Cure HHT Launches 23rd Center

mass gen23rd HHT Center of Excellence in North America

Massachusetts General Hospital

Boston, MA

 

 

mas gen notesCure HHT has brought Massachusetts General Hospital (MGH) together with Mass General Hospital for Children and Massachusetts Eye & Ear Infirmary to form the only facility in the state specializing in the diagnosis, evaluation and treatment of HHT.

This collaboration allows them to provide specialized care across a patient’s lifespan. The MGH HHT Center offers compassionate, family-centered multidisciplinary care, led by Dr. Josanna Rodriguez-Lopez, coordinating care for adult and pediatric patients. She is joined by an outstanding group of physicians, including Dr. Raymond Liu as the Associate Director, who share her dedication for the multidisciplinary treatment of this disease.

Rodriguez-Lopez, Josanna MGH

 

Dr. Rodriguez-Lopez has dedicated her career to treating patients with pulmonary vascular disease. As the Associate Director of the Pulmonary Hypertension and Thromboendarterectomy Program at MGH, she specializes in all aspects of pulmonary vascular disease, with a particular interest in pulmonary arteriovenous malformations. She has several years of experience managing HHT and is looking forward to growing the HHT program as well as developing a strong partnership with Cure HHT and the HHT community.

 

Specialties at MGH HHT Center  (*adult and pediatric services)

Cardiology*

Dermatology

Dentist/Oral Surgeon

Genetics/Counseling

Gastroenterology*

Hematology*

Interventional Radiology

Neuro-interventional Surgery

Neurology/Stroke

Neurosurgery*

OB/GYN

Otolaryngology (ENT)*

Primary Care (PCP)

Pulmonology*

Radiology

Surgery*

 

MGH_Mass General Childrens Hospital

MGH_Harvard Logo

MGH_Mass Eye and Ear

MGH_Hospital

 

 

 

Insight into the Formation and Regression of Brain AVMs from Notch4 Model of the Disease Relevant to HHT

Presenter

Wang, Rong PhDRong Wang, Ph.D. is a Professor and Mildred V. Strouss Endowed Chair in Vascular Surgery, in the Department of Surgery at the University of California, San Francisco. Dr. Wang had the distinction of working as a post-doctoral fellow in the laboratory of Michael Bishop, MD, who is a winner of the Nobel Prize in Medicine and Chancellor of UCSF.

Dr. Wang's team is engaged in state-of-the-art research involving key proteins necessary for blood vessel growth (angiogenesis) and arterial growth (arteriogenesis). They have found the Notch 4 protein can cause dramatic blood vessel enlargement in adult animals and the focal adhesion kinase protein is essential to maintain existing blood vessel structure. Her laboratory was the first to publish that Notch mutations can cause AVMs in mice, and correction of a causal molecular lesion can lead to reversal of the disease progression, opening a new line of inquiry linking this disease to genes crucial for arterial-venous differentiation.

Webinar

Join Dr. Rong Wang for a discussion of her recent discoveries presented at the 2015 International HHT Scientific Conference. These findings provide unprecedented insight uncovered from studying Brain AVM formation, and regression, in real time with high resolution microscopy in live animals with HHT. These studies may advance our understanding of how HHT disease is initiated and inspire new strategies in the development of treatment options.

Webinar Highlights

  • Explanation of notch signaling and its relevance to HHT
  • Research shows notch signaling is increased in human Brain AVMs
  • Notch and HHT2 (Alk1 or ACVRL1) share remarkable similarities
  • Discussion about AVM regression
  • Handout - What is Notch?   (an explanation provided by Dr. Christopher Hughes, Chairman, Cure HHT Global Research and Medical Advisory Board)

ACT NOW

  • SHARE this information and webinar link with your family members affected by HHT

Cure HHT

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. If you found value in this information, please consider making a donation NOW to keep this initiative moving forward. It is through the generosity of our donors that we can continue to provide this valuable education to the HHT community.

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Angiogenesis Publishes HHT Summary and Abstracts

CureHHT-Banner Abstract RegOnlineIn June, Cure HHT hosted more than 220 physicians, scientists, nurses, genetic counselors and advocates from 18 countries at the 11th International HHT Scientific Conference. This was the first time the conference was hosted in North America, and the first time our organization was the sole host for the entire event.

The biennial scientific conference provides an opportunity for the most prestigious HHT experts in the world to discuss their research on every topic from basic science to clinical trials, all of which will lead to new and improved therapies for HHT management.

We are very excited that the executive summary of the conference, including overviews of the 66 presentations and 96 research posters shared over four days, is now available online from the journal Angiogenesis. Some of this information may be difficult to understand - our researchers are the best in their fields, after all - but we encourage you to share the article with your HHT physician, and to watch the recent webinar that addresses the conference summary.

Angiogenesis HHT EXECUTIVE SUMMARY

Angiogenesis HHT ABSTRACTS

*The online article fee of $40 per article has been waived through December 15 to allow our community to access this critical information.*

HHT Research Breakthroughs

November 11, 2015
Presented by: Dr. Christopher Hughes, Chair, Cure HHT Global Research and Medical Advisory Board and Dr. James Gossage, Cure HHT Medical Director

Presenter

Dr. Christopher Hughes is a Professor at the University of California at Irvine and Chair of Cure HHT’s Global Research and Medical Advisory Board. Dr. Hughes holds a Bachelor’s of Science (Hon) degree from University College, London, England and a PhD from King’s College, University of London focusing in neuropathology. Dr. Hughes has extensive experience in the field of vascular biology and the process of angiogenesis, in particular, his lab has studied the role of notch signaling in vascular development and they were the first to demonstrate the role of notch in regulating tip cell function during angiogenic sprouting.

Dr. James Gossage is Director of the Pulmonary Vascular Disease program and HHT program at Georgia Regents University and he is the Medical Director for Cure HHT. He received his medical degree in 1984 and did a fellowship in Pulmonary and Critical Care Medicine at Vanderbilt University from 1988-1991. Dr. Gossage has taken care of HHT patients since 1995 and opened up his HHT Center of Excellence in 2003. In 2008 he was appointed Medical Director of the HHT Foundation, now known as Cure HHT. Dr. Gossage’s research and clinical interests include HHT, pulmonary hypertension, pulmonary embolism, and right heart catheterization.

Webinar

The 11th International HHT Scientific Conference, sponsored primarily by Cure HHT, brought together 250 of the world’s leading HHT experts in both basic research as well as clinical practice focusing on translation of findings between the fields. Basic research is the engine that drives discovery of new drugs and therapies, but it relies on constant input and feedback from clinicians.

Join Drs. Hughes and Gossage as they review advances in HHT research and treatment presented at the 2015 International HHT Scientific Conference. Hear about advancements in Avastin treatment for bleeding; screening and treatments for PAVMs; and the latest basic science research that will lead to clinical trials and drug therapy! After the presentation, they answered your most pressing questions.

Webinar Highlights

  • Executive Summary of the research presented at the 11th International HHT Scientific Conference; published in the October 2015 edition of Angiogenesis This publication is free to view from now through December 15, 2015.
  • Download the pdf of the Executive Summary and the Abstracts presented at the 11th International Scientific Conference as they were published in the October 2015 edition of Angiogenesis
  • Novel drug therapy effectiveness reported in clinical trials
  • Valuable information collected through Outcomes Registry in France
  • New protocols for follow-up screenings of lung AVMs in HHT patients

Cure HHT

Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. If you found value in this information, please consider making a donation NOW to keep this initiative moving forward. It is through the generosity of our donors that we can continue to provide this valuable education to the HHT community.

 Donate Now Button - Blue Rectangle

 (Please write "webinar" in comment section of donation form)

Continuing Medical Education

 

HHT for Clinicians at the 17th National Patient and Family Conference

CME Evaluation Form - Attendees who registered to receive continuing education credit need to print, complete and email the CME evaluation form to [email protected] by August 27, 2014. A certificate will be issued upon receipt of this documentation.

 

July 18-20, 2014 
Hyatt Regency
Santa Clara, California

Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome, is a potentially life-threatening genetic disorder that, if properly diagnosed and treated, can be managed and tragedies can be averted. This program is designed for medical professionals who are likely to encounter HHT patients, among them: internal medicine, otolaryngology, gastroenterology, cardiology, interventional radiology, neurology, genetic counseling and nursing.

Accreditation Statement
This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of the Academy for Continued Healthcare Learning and HHT Foundation. The Academy for Continued Healthcare Learning is accredited by the ACCME to provide continuing medical education for physicians.

ACHL has been accredited as an Authorized Provider by the International Association for Continuing Education and Training (IACET). ACHL is authorized by IACET to offer 1.3 CEUs for this program.

Provider approved by the California Board of Registered Nursing, Provider Number 14803 for 12.4 contact hours.

Credit Designation Statement
ACHL designates this educational activity for a maximum of 15.5AMA PRA Category 1 Credits™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

Activity Objectives
Upon conclusion of this conference, participants will be able to:

  • Define the diagnostic criteria for HHT
  • Identify treatment options for Pulmonary and Cerebral AVM
  • Identify treatment options for Epistaxis
  • Identify treatment options for Gastrointestinal and Liver AVM
  • Discuss new potential therapies for the management of refractory HHT complications

Download the Conference Brochure

 

Medical Conferences

Past Events:

CDC Conference: HHT in the 21st Century

March 5-6, 2008
Atlanta, Georgia

The Hereditary Hemorrhagic Telangiectasia (HHT) Foundation International, in conjunction with the Center for Disease Control and Prevention (CDC), held a landmark conference on March 5 – 6, 2008 at the Tom Harkin Global Communications Center in Atlanta, Georgia.

The purpose of this conference was to define and prioritize objectives to improve clinical outcomes, enhance the quality of life for those affected by HHT, and reduce intrinsic and extrinsic costs related to HHT treatment.

Please click on the following links to learn more about the Conference:

Over 60 health care professionals including: emergency medicine physicians, school nurses, family practitioners/internal medicine, pediatric specialists, physician assistants, dentists and dental hygienists, dermatologists, gastroenterologists, otolaryngologists, hematologists, pulmonologists, neurologists, cardiologists, radiologists, geneticists as well as representatives from governmental and non-governmental organizations attended this national conference. You can view participants by clicking on Participant List.

HHT is a long neglected national health problem that affects 75,000 Americans. HHT is a multisystem vascular genetic disorder producing arterioveneous malformations in the brain and lung which may result in stroke or hemorrhage. Twenty percent of children and adults with HHT die prematurely or may become disabled due to lack of recognition by the medical community. These outcomes are largely preventable with proper intervention. Timely diagnosis and treatment of HHT could improve outcomes and quality of life for people living with HHT while eliminating $6.6 billion in avoidable health care costs.

The conference was the first step in addressing this national health issue by identifying outreach programs that will increase surveillance, increase early recognition of people affected with this genetic condition, and support life saving interventions

For more information, contact Marianne Clancy, Executive Director of the HHT Foundation International, at 800-448-6389 or email her at [email protected] .

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.

NIH Workshop - HHT Vascular Biology & Pathophysiology

June 8-9, 2006
Bethesda, MD

HHT Foundation in conjunction with the National Institute of Health (NIH) sponsored an HHT Workshop for basic scientific research. The conference provided an opportunity for NIH to formulate an HHT research plan. The workshop included a mix of keynote talks, platform presentations, and open discussion on several themes, including:

  1. Transforming Growth Factor-Beta Pathway and HHT
  2. Endothelial Biology and HHT
  3. Vascular Biology and HHT
  4. Chemical Genomics and HHT
  5. Organ Pathophysiology in HHT
  6. Click on the link below to view the Overview of the Program:

http://www.genome.gov/19519386

Clinical Practice Guidelines for HHT

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.