#HHTFamCon 2016

More than 200 people attended the HHT National Patient and Family Conference in Boston, representing seven countries with people traveling from as far as Sweden, Japan, England and Australia. They attended more than 20 educational sessions led by experts in HHT treatment and research during the three-day event. Together, they generously raised more than $75,000 toward the Cure HHT mission.

But the 18th HHT National Patient and Family Conference was so much more than a listing of numbers. It was a whole weekend dedicated to connecting the different parts of our HHT community – bringing researchers, doctors and patients together to continue toward a HHT-free future.

Patients were able to chat one-on-one with doctors over breakfast; researchers volleyed theories during the poster sessions to improve projects; young scholars sat with mentors between session discussing HHT science; and kids with HHT met others their age for the first time.

Thank you for making the 2016 #HHTFamCon one of the best Cure HHT conferences. We can’t wait to do it again in two years! Click here to see the top 100 photos from #HHTFamCon.

Conference Breakthroughs

HHT Mobile App – A team from University of Michigan is working to develop an interactive mobile HHT app that includes education resources, patient checklist for appointments and test results, self-monitoring, customized notifications and patient-provider communication.

Beyond Avastin - Clinical and basic science researchers are looking at a variety of FDA approved drugs (anti-inflammatory and MTOR inhibitors) to be repurposed for use in HHT to keep AVMs from developing or reversing AVMs that already exist.

Cancer & HHT- Patients with HHT and certain kinds of cancer show slower onset and progression of the cancer and better survival outcome due to the inability of their tumors to vascularize and grow. The survival benefit of HHT status across multiple cancer may present a new therapeutic line of investigation for these cancers.

Available for Purchase






Special Thanks To:

Silver Sponsors: Burroughs Wellcome Fund, Olitsky Family Foundation
Bronze Sponsors: Actelion, B. Braun CeGaT, Cook Medical, Massachusetts General Hospital, NewYork-Presbyterian/Columbia University Irving Medical Center, Silber and Weissel Families
HHT Center of Excellence Sponsors: ARUP Laboratories, Cincinnati Children’s Medical Center, Yale University
Unique Program Sponsors: Anonymous Donor Family, Nancy Padgett
Exhibitors: Actelion, Bon-nare, Invitae, Medtronic, Stanford Medicine
Give Aways: BleedCEASE, Massachusetts General Hospital
Scholarship Fund Donors: This support allowed seven adults and three children to attend.
Volunteers: Charles Bukauskas, Angela Carlisle-Brown, Brittney Conger, Lindsey Conger, Sam Current, Art Gutkowski, Frank Linke, Marijo McCune, Jody Nissan, Annette Sercombe and Roz Youngert

HHT Insurance: Are You Covered?


Michael Timothy is a licensed insurance agent with US Health Advisors. He’s set a personal mission to use his knowledge to help other HHT families. Michael’s wife and two of his three sons have HHT.

In addition, Michael and his wife, Nichol, are committed to helping HHT families find affordable health coverage. If you want help evaluating the insurance plan options for your family, contact Michael at [email protected] or (908) 334-7861.



Join Insurance Agent Michael Timothy to learn about the best insurance practices for HHT patients to save the most money while having access to the best treatment. Topics include insurance basics, Obama Care fact or fiction, explanation of plans and risk exposure.

Webinar Highlights

  • Deductible, Co-insurance and Co-pays
  • Five (5) main types of health insurance
  • Different Plans - HMO, PPO-POS, First dollar payer
  • Affordable Care Act ("Obamacare") and what it means for HHT patients
  • Supplemental Insurance and Life Insurance



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.




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.

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Scientific Conference Registration


Get Early Bird Prices While They Last!

Discounted Hotel Rates Available:

Single Occupancy €179
Double Occupancy €189

Early Bird Registration Expires
April 15:

Save $75 on registration costs!

Advances in HHT treatment and therapies are impossible without the collaboration of researchers and clinicians like you.

Join us at the largest scientific HHT meeting in the world!

This is your chance to be part of major breakthroughs inspired by cross-disciplinary presentations and discussions at the HHT International Scientific Conference.

Dates: June 8-11, 2017 (June 7th Welcome Reception)
Book Your Hotel Now: Radisson Blue Resort & Spa, Dubrovnik Sun Gardens, Croatia

Agenda         Pricing        Hotel

Have questions? Contact Nicole Schaefer at [email protected] or 410-357-9932.