Advance HHT Research and Earn $50

Cure HHT is collaborating with Sanguine, a provider of at-home clinical research services, to give you the opportunity to donate blood from home for an HHT research project.  You can help advance research for HHT with a simple one-time blood donation and receive $50 for your time.

You may qualify to participate if you:

  • Are 18 years of age or older
  • Have been diagnosed with HHT
  • Have a confirmed medical history of HHT (ESS score of 2-6)
  • Live within 100 miles of Boston, MA or be willing to travel within 100 miles of Boston

To sign up, click the link below or call Dalia Sherif at (818) 804-2471. 

 


 

What is preclinical research?

In preclinical research, researchers test their theories on human samples like blood rather than human participants. This phase helps researchers determine the safest and most effective way to move forward with their project and often helps define the parameters of future clinical trials.

 

How will my blood donation help?

Researchers will always rely on samples from the patient population that they are researching in order to perform their preclinical research. Your blood is special. It is the key to new therapies and diagnostics. Without it, researchers cannot move forward with their clinical tests and research projects are stalled or put on hold.

Sign Up Now ›

 

Why Sanguine?

Sanguine is a leading provider of at-home clinical research services empowering patients to participate in research studies from the comfort of their homes using smart technology and a mobile health staff. For more information, visit .

RECAP: 12th HHT International Scientific Conference

For the first time at an HHT Conference, voices were heard from six continents, motivating interest for those new to the field, and encouraging young researchers and clinicians to continue to build a career surrounding HHT. The attendance of young scientists was at an all-time high and the conference was buzzing with the excitement of knowledge and opportunity – a buzz that could literally be heard during breaks and mealtimes when researchers and clinicians stood together plotting the destruction of HHT.

 

 

195 HHT scientists, many new to the community, traveled from far and wide to Dubrovnik, Croatia – the “Pearl of the Adriatic” – for the 12th HHT International Scientific Conference. A strategic location choice; if the exciting new breakthroughs in HHT research wasn’t enough to lure scientists to Dubrovnik, then the vast beauty of mountains and sea most certainly would be. While enticing, this great beauty was not distracting, as scientific discussion of mechanisms, diagnosis, and treatment of the disease raged on, fueled by espresso and 6am dips in the Adriatic.

 

It was truly amazing to see the array of information presented at this meeting in the form of 8 invited speakers, 58 oral presentations, and 117 poster presentations, that all function to develop a greater global understanding of HHT. As always, this event continued to foster the opportunity for scientific collaboration, welcome young scholars to the community, and rekindle old friendships. Enjoy these photos from the conference.

Oral Presentation Abstracts, Poster Presentation Abstracts and an Executive Summary of the talks and workshops will be published in the October issue of Angiogenesis. Cure HHT will also host a webinar this fall to review the highlights of the conference, with hopes that the knowledge gained from this meeting will spread and reach all corners of the HHT community. In the meantime, check out the Basic Science Summary Presentation presented by Dr. Carmelo Bernabeu and the Clinical Science Summary Presentation presented by Dr. Urban Geisthoff.

 

 

Cure HHT was honored to provide prizes for the best young scholar presentations. Congratulations to our winners!

HHT Young Scholar Travel Awardees

Clinical Oral Presentations

  1. Ali Tayebi-Meybodi, University of California San Francisco, USA
  2. Daniel DePietro, University of Pennsylvania, USA

Basic Science Oral Presentations

  1. Elisa Rossi, Université Paris Descartes, France
  2. Whitney Wooderchak-Donahue, University of Utah / ARUP Laboratory, USA

Clinical Poster Presentations

Anna Hosman, Netherlands

  1. Anthony Cannavicci, University of Toronto / St. Michael's Hospital, Canada
  2. Anna Hosman, St. Antonius Hospital, Netherlands

Basic Science Poster Presentations

  1. Sara Plumitallo, University of Pavia, Italy
  2. Melissa Hector-Greene, Duke University, USA

 

Thank You!

We'd like to give an enthusiastic thank you to everyone who contributed to this conference both scientifically and financially. Your dedication to this community had a direct impact on Cure HHT's ability to provide attendees with a rich and fulfilling experience. Your contributions are deeply appreciated by all!

  • Conference Program Executive Committee and Members
  • Invited Speakers
  • Judges and Session Chairs
  • Patients and Volunteers
  • Sponsors and Exhibitors
  • Donors who support Cure HHT and all of our research and education activities

 

Conference Program Exec. Committee

Conference Program Committee

Invited Speakers

HHT Patients

Conference Sponsors & Exhibitors

 

 

Protected: 2016 HHT Conference Materials

This content is password protected. To view it please enter your password below:

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

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.

 Donate Now Button - Blue Rectangle

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

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)