Cure HHT Pura Vida Bracelets

PuraVida

 

Limited Edition Cure HHT Pura Vida Bracelets

Only 80 available! Get yours before they run out.

The braided blue and red colors embraced by Cure HHT represent the veins and arteries of the body which are affected by HHT. This bracelet is your way of making the invisible tangle of AVMS and telangiectasias visible to those who do not know about or understand HHT.

Pura Vida stands for the enjoyment of life, the celebration of good fortune and the refusal to take anything for granted. These bracelets represent living life to the fullest, and that's what Cure HHT wishes for all of its members.

 

Scientific Conference in Review

The Passion to Find A Cure

Captiva Group Photo

 

More than 220 physicians, scientists, nurses, genetic counselors and advocates represented 18 countries at the 11th International HHT Scientific Conference. Over four days, they heard 66 presentations and viewed 96 research posters. This year featured more presenters and research than ever before.

Because we could not possibly include the details of each research presentation, we have provided explanations of the most prominent topics. A full executive summary, written by a committee of scientists, doctors and researchers, will be published in Angiogenesis this fall.

It was truly incredible to see so many brilliant people working toward a single purpose, but perhaps even more impressive than the minds of the researchers is their passion.

Lessons in Clinical Aspects of HHT

One of the chief concerns among HHT patients is quality of life, or the question “How can I lead a more normal life with HHT?” Presentations on new clinical lessons in HHT revealed encouraging progress in the contrast between HHT and general populations. Dr. Claire Shovlin, Director of the HHT Center in London, shared particularly promising research on controlling some of the symptoms of HHT patients often cite as most disruptive to a normal life.

Discussions in Pediatrics

Cure HHT frequently hears from parents in our community who worry about getting their child diagnosed and treated. A discussion of pediatric care showed significant work is being done to ensure children receive the most accurate screening for HHT. Further research revealed doctors are finding ways to predict some of the more serious circumstances faced by children as a result of HHT and its symptoms.

Advances in Diagnostics

Because HHT can affect so many different parts of the body, patients often struggle for years with the side effects of manifestations they were not even aware they had. Several of our researchers presented critical information on advances in the diagnostics of invisible symptoms. These results will lead to faster and more accurate diagnosis of underlying problems, as well as safer methods for identification and treatment.

New Therapies for HHT

Our medical and scientific communities are committed to finding a cure for HHT, but in the meantime they work tirelessly to provide better treatments for their patients. Some of our top doctors shared the results of trials which showed exciting new procedures and drug therapies used to treat HHT. In particular, great strides are being made in the treatment of nosebleeds, one of the most common and disruptive of all symptoms.

 

Young Researcher Award WinnersJAG_9986

Best Scientific Poster

  1. Xuan Jiang, PhD
  2. Pernille Torring, MD, PhD

Best Clinical Poster

  1. Freya Droge, MD
  2. Marcelo Serra, MD

Best Scientific Oral PresentationJAG_0022

  1. Valeria Orlova, PhD
  2. Roxana Ola, PhD

Best Clinical Oral Presentation

  1. Guiseppe (Joey) Latino, MD
  2. Veronique Vorselaars, PhD

Travel Award Winners

Frank Baiden, MD (Ghana)

Stephanie Bowers, PhD (United States)

Andrea Cajal, MSc (Argentina)JAG_0158

Dan Dardik, MD (Argentina)

Melissa Dickey, NP (United States)

Pierre Guihard, PhD (United States)

Alexis Harrison, MD (United States)

Anna Hosman (The Netherlands)

Lawrence Huang, PhD (United States)

Saad Ibrahim, MD (United States)JAG_0211

Xuan Jiang, PhD (United States)

Amudhan Jyothidasan, MD (United States)

Yong Hwan Kim, PhD (United States)

Guiseppe (Joey) Latino, MD (Canada)

Ross Allan Mendoza, MD (Philippines)

Roxana Ola, PhD (United States)

Valeria Orlova, PhD (The Netherlands)2

Maria Elena Riccioni (Italy)

Lynne Sekarski, RN (United States)

Marcelo Serra, MD (Argentina)

Karen Smith, RN (United States)

Veronique Vorselaars, PhD (The Netherlands)

2015 HHT DATA Act Updates

The HHT Diagnoses and Treatment Act

Laying Down the HHT Law

The HHT Diagnosis and Treatment Act HR 1849 was introduced in the House of Representatives on April 16, 2015 as part of the 114th Congress.

The bill would be the first to create a federally led and financed initiative for early diagnosis and appropriate treatment of hereditary hemorrhagic telangiectasia.

The HHT DATA Act would require the Centers for Disease Control and Prevention to conduct surveillance initiatives, start an internal HHT resource center and conduct public awareness programs.

The act would also authorize the appropriation of $5 million per year for the next five years to be used to improve early detection, screening, diagnosis and treatment of HHT.

Our goal is to get as many legislators as possible to co-sponsor this bill! It's time to lay down the law for Cure HHT. 

Click to get the HHT DATA Act passed by the end of the year!

U.S. House of Representatives

H.R. 1849
The HHT Diagnosis and Treatment Act of 2015 was introduced by U.S. Representative Ed Royce of California and U.S. Representative Jim Himes of Connecticut on April 16, 2015.

Co-Sponsors: 2/100

House of Representatives Sponsors:

Ed Royce (R – CA)
Jim Himes (D – CT)

House of Representatives Co-Sponsors:

Rosa DeLauro (D-CT)
Zoe Lofgren (D-CA)
Eleanor Norton (D-DC)

Find your Representative

Senate

We are actively working on finding a senate champion for the HHT DATA cause!

Do you think your representative is right for the job? Let us know at 410-357-9932 or [email protected]

Click to Find your Senator