Webinars

Upcoming LIVE Webinars

Making the Connection Between Legislative Advocacy and HHT Research Funding

When: February 12, 2018 from 5-6pm EST
Presented by: Mark Vieth, Sr. Vice President for CRD Associates

Join Cure HHT Legislative Advisor Mark Vieth for a behind-the-scene look at how Cure HHT can impact federal research funding and awareness of this disease and your role in the process. HHT has received significantly less federal funding than many other rare diseases. This needs to change! It is time to convert the voice of the HHT community into increased federal funding for HHT research. A cure is on the horizon, we just need your voice and engagement in the process to change legislation in Washington, DC and advance HHT research to the next level.

 

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Over the past nine years, Cure HHT has funded legislative activities that resulted in Congressional Language recognizing Hereditary Hemorrhagic Telangiectasia, HHT specific conferences with National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), NIH funding for five HHT researchers to receive $10,542,000 since 2008, the inclusion of vascular malformations in the Department of Defense research funding programs that has allowed eight HHT researchers to receive $15,885,199 since 2015, and the most recent collaboration with the CDC and Hemophilia Treatment Center pilot study.

In 2017, HHT researchers received $5.7MM in federal funding. While this is up from $2.2MM in 2015 and $500,000 in 2012, it is still substantially less than other rare diseases that impact fewer people. For instance, in 2017 Muscular Dystrophy received $82MM in federal funding (affects 1 in 6,500 people) and Huntington’s Disease received $39MM in federal funding (affects 1 in 10,000 people). 

“What a wonderful webinar tonight about HHT, and how it affects the liver and the heart. Awesome!”

MaryAnn

Brookville, PA

“I am a Nurse Practitioner and I learn so much from these webinars about my husband’s HHT. My two daughters have it as well.”

Alice

Kirksville, MO

Past Webinars

HHT Scientific Conference Summaries (recorded)

January 10, 2018
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Tangled Web of HHT (recorded)

December 11, 2017
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#OnMyOwn (recorded)

October 24, 2017
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HHT: Caring for the Younger Generation (recorded)

September 26, 2017
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Ask the Doctor

May 16, 2017
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What’s the Skinny on HHT? (recorded)

January 24, 2017
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In the Know – HHT and Kids (recorded)

June 14, 2016
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ABC’s of AVMs (recorded)

May 18, 2016
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Pumping Iron in HHT (recorded)

April 27, 2016
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AVM Progression and Regression – Findings from a Notch-Mediated Mouse Model of Brain AVM (recorded)

March 9, 2016
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Pulmonary Hypertension and HHT (recorded)

February 24, 2016
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Let’s Get Personal – HHT in Women (recorded)

February 4, 2016
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HHT Research Breakthroughs: What it Means For You (recorded)

November 11, 2015
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Nosebleed Management in HHT (recorded)

October 19, 2015
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What Does This All Mean to Me and My Family? (recorded)

June 3, 2015
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Pathophysiology of HHT and Advances in HHT Research (recorded)

April 28, 2015
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Cardiac and Liver Manifestations (recorded)

February 26, 2015
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Brain Vascular Malformations in HHT: Knowledge is the Key (recorded)

February 11, 2015
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What are the Odds? The Importance of Genetic Testing in Families with HHT (recorded)

November 25, 2014
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HHT in Children: Talking to Your School Nurse (recorded)

October 21, 2014
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