Patient and Family Conferences


HHT Disease Conference Save the Date

July 18-20, 2014
Santa Clara, California
SAVE THE DATE . . . . more information will be coming soon.



APRIL 27, 2013
Chapel Hill, North Carolina
QltvidjaNWOcDyI4GZBp96Y8giFj3YIjklqIacPwuvMDr. Raj Kasthuri, Director of the HHT Center, explained the genetics of HHT and the most current screening and treatment procedures for every organ to over 40 HHT patients and their family members. New topics included “Nutrition, Medications and HHT” ; attendees left with an increased awareness of the bleeding risk of common prescription, non-prescription, and natural medications in patients with HHT.  We were honored to have Dr. Douglas Marchuk, Professor and Vice-Chair of the Department of Molecular Genetics and Microbiology at the Duke University School of Medicine join us to give an update on HHT Research.  Dr. Marchuk, (who refers to himself as the grandfather of HHT), is responsible for the discovery of all three known HHT genes.

A special thank you to all of our presenters:  Dr. Hortensia Alvarez, Dr. Charles T. Burke, Dr. Craig Burkhart, Dr. Alexander Farag, Dr. Raj Kasthuri, Ofri Leitner, Dr. Douglas Markchuk, Dr. John Valgus, and Karen Smith, HHT Program Coordinator for their commitment and devotion to this disorder. We are also grateful for Nona Saling, Regional Network Alliance (RNA) Coordinator for North Carolina who led a discussion at lunch.


OCTOBER 26-28, 2012
Orlando, Florida

QgRjCPHwWTSX8yBgkssgQ7T4-njCdNJ-lutAXH8SpPQHHT is a Family Affair and that was never more evident than at this year's National Patient and Family Conference in Orlando, Florida. Over 200 adults and 30 youth learned about HHT, engaged in interactive discussions, and networked with physicians, researchers, and fellow patients. In addition to presentations on the treatment and management of HHT, there were several new lectures and workshops on nutrition, emergency situations and iron deficient anemia.  And, as expected, the Symposium on Nosebleed Management was informative, enlightening and entertaining.

The general session lectures were videotaped for those who weren't able to attend and for those who did attend but want to share the information with their family. DVD's will be on sale soon.

THANK YOU to the . . . .

Sponsors, exhibitors and advertisers for supporting the education of this disease and making your products and/or services available to HHT patients around the world.

Speakers and volunteers who donated their time to the HHT Foundation so that families affected by this disease could participate in the most comprehensive and successful conference yet.

Researchers who presented posters of their HHT findings. Without your commitment and dedication to HHT research, there is no hope for a cure.

Individuals who donated items for the live and silent auction. Our Gala Event on Saturday night would not be possible without your generosity.

Hilton Orlando for providing us a wonderful venue. The hotel management and banquet staff made us feel welcome and we appreciated the special accommodations made on our behalf in light of the "Spooky Conference".


Conference Brochure
Adult Program Agenda
Adult Workshops
Youth Program Agenda
Symposium on Nosebleed Management
Conference Speakers