#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.

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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