Genetic Testing Recorded Webinar

GeneticTestingThank you to Ofri Leitner, board certified genetic counselor and clinical assistant professor of genetics at the University of North Carolina at Chapel Hill,  for donating her time to give us a comprehensive overview of the inheritance patterns of HHT, the benefits and limitations of genetic testing for HHT. and the options for family planning (prenatal genetic diagnosis and pre-implantation).

View and Listen to other recorded webinars on our website.






What are the Odds? The Importance of Genetic Testing in Families with HHT

Presented by: Ofri Leitner, MS, CGC from University of North Carolina at Chapel Hill

NEW HHT Fact Sheets


TeensAs part of the new Cure HHT brand, we have created NEW resource materials to be shared with you local physicians and family members. We encourage you to share our website,, and these resources which can be downloaded from the Resource Section.


Some day soon, we will find a cure for HHT. Until then, the disease is one that we must learn to manage throughout our lives. It is essential that you have all of the resources necessary to take control of your life. Knowledge is power.


12 fact sheets are now available and more are on their way....

  1. Advice for People Newly Diagnosed with HHT
  2. Know the Signs & Symptoms
  3. Talking To Your Physician About HHT
  4. My Child Has HHT: Screening Guidelines
  5. I Have HHT: For Kids
  6. Coping with HHT: For Teens
  7. Living with HHT
  8. Family Ties: Genetic Testing
  9. HHT & Stroke
  10. Aging Patients with HHT
  11. HHT & Depression
  12. My Partner Has HHT

HHT Scientific Conference / Call for Abstracts


CureHHT-ScientificConference-Logo-Captiva-Vertical-ColorOn behalf of the Organizing Committee, we would like to invite you to join us on Captiva Island for the 11th International HHT Scientific Conference. We will host a Welcome Reception on June 10th and scientific sessions on June 11-14, 2015.  The 2015 meeting will bring together the world’s leading HHT experts in both basic research as well as clinical practice and will focus on translating findings between the fields. Basic research is the engine that drives discovery of new drugs and therapies, but it relies on constant input and feedback from clinicians. The annual meeting is a must-attend event for both established and early-stage researchers, as well as clinicians experienced in treating HHT, with those just entering the field. The program will feature several outstanding keynote speakers, multiple cross-disciplinary sessions and extensive opportunities for presenting and viewing posters.

 South Seas Island Resort

The conference venue will be the South Seas Island Resort on Captiva Island in Florida, USA.  This exotic 330 acre resort is quietly nestled within a secluded, unspoiled refuge along the shell-laden beaches of Florida’s gulf coast.  The South Seas Island Resort is an expansive, plantation-style village that embraces the natural beauty of its surroundings and includes a wildlife preserve and estuary. This is a great place for kids and families so bring everyone. The beauty and tranquility of your surroundings will only enhance the 3 and ½ days of collegial and stimulating HHT talks and poster sessions that we have planned for you!


Official 11th International HHT Scientific Conference Website

The website provides detailed information about the program, registration, hotel accommodations, travel, sponsor/exhibitor opportunities, and much more.


Call for Abstracts

The Organizing Committee invites authors to submit abstracts to be considered for inclusion in the Scientific Program for either oral or poster presentations. Case reports must be submitted for poster presentation. The conference sessions will be organized around the three major themes of Diagnosis, Treatment, and Mechanism.  Within each of these themes we will bring together basic scientists and clinicians, in the hope of stimulating and educating both.

Abstract submission guidelines are detailed on the conference website. All abstracts must be submitted electronically by midnight (EST) on February 10, 2015.


Travel Awards

Cure HHT will be granting Travel Awards for twenty-four (24) abstract presenters to attend the 11th International HHT Scientific Conference. Interested investigators should indicate their desire to be considered for a Travel Award on the Abstract Submission Form.

  • Eighteen (18) Travel Awards will be provided to early stage investigators (defined as investigators who are within 3 years of completing their terminal research degree or within 3 years of completing their medical residency/sub-specialty fellowship at the time of abstract submission), residents, postdoctoral/clinical fellows, or PhD candidates are eligible for Travel Awards.
  • Four (4) Travel Awards will be provided to individuals from the fields of nursing or genetic counseling.


New information on HHT and Pregnancy

Pregnant WomanWe invite you to read this newly published study out of Toronto on HHT and pregnancy conducted by Dr. Els de Gussem, an HHT Foundation Robert I White Investigator Awardee and recipient of the Foundation's Young Clinician's Award. This study was a collaboration with Dr. Faughnan and team in Toronto and the Netherlands HHT Center (Dr. Johannes Mager). 

Read the summary or the full article here.

The HHT Foundation funds promising doctors, clinicians and scientists in researching causes, the efficacy of treatments and the genetics surrounding HHT. Find more information about the HHT Foundation research grants here.

Our Recipe for Fundraising Success WEBINAR

Lady Chef


Thank you to Christine Kirkley and Allyson Clancy for donating their time to give us their recipe for a successful fundraising and awareness event.





If you are interested in organizing an event in your area, please email Christine Kirkley or call Cure HHT at 410-357-9932.


View and Listen to other recorded webinars on our website.

Our Recipe for Fundraising Success

Presented by: Christine Kirkley and Allyson Clancy