Our Impact

Since its inception in 1991, Cure HHT has been working tirelessly to raise awareness about HHT, improve treatments, and increase patient access to care.

 

Continuing to lead the way...

Our current initiatives

2018

  • Launched new Cure HHT website featuring comprehensive resource library, educational materials and research for global HHT community
  • Plan to launch the HHT Outcomes Registry, increasing the availability of HHT patient data to researchers and allowing for the creation of natural history studies about the disease
  • Plan to release first free HHT app for HHT patients to track nosebleeds and other critical medical information to share with physicians, $30,000

2017

  • Department of Defense PRMP awarded $10 Million to five HHT researchers in a program project grant

  • Congressman David E. Price secured federal funding for the new HHT pilot initiative, collaborating with 3 existing Hemophilia Treatment Centers to evaluate and manage HHT in underserved areas

  • Funded and organized the 12th International Scientific & Research Conference in Dubrovnik, Croatia, hosting over 200 researchers and scientists from 23 countries, $76,250

  • Updated protocols and standards for new and existing HHT Centers of Excellence

  • Engaged with FDA to work on establishing a pipeline of opportunities for therapeutic drug treatment of HHT

  • Offered over 30 webinars, reaching thousands of HHT patients and their families

2016

  • Creation of North American Therapeutics group focused on prioritizing opportunities to increase HHT multi-center clinical research and translational research in North America
  • Expanded to 25 HHT Centers of Excellence in North America
  • Celebrated the foundation's 25th anniversary

 

2015

  • Launched the Young Scholar Research Program, investing $150,000 in young scholars

  • Funded and organized the 11th Scientific & Research Conference in Captiva, Florida hosting 185 researchers from around the world, $33,000

2014

  • Became Cure HHT to reflect our progress and aspirations

  • Through Cure HHT efforts, the Defense Appropriations Bill was passed, adding malformation-related conditions, including HHT, to the list of eligible research topics, granting HHT researches access to over $247 Million in federal grants

  • Launched the HHT Physician Directory, a database accessible to families in need of HHT care and support

  • Expanded to 20th HHT Center of Excellence established in North America

  • Supported the nosebleed study in collaboration with Stanford University
  • Began providing educational HHT Webinars

2013

  • Expanded to 19 HHT Centers of Excellence in North America

  • Funded the 1st North American Outcomes Registry, $131,000

  • Funded 1 HHT research grant totalling $35,000

2012

  • Appointment of 1st Cure HHT Scientific Research Director, Dr. Marie Faughnan, St. Michael's Hospital / University of Toronto HHT Center of Excellence

2011

  • Funded 1 HHT research grant totalling $50,000

  • Conducted Continuing Medical Education Courses to physicians and healthcare professionals

  • Funded and organized production of 1st professional HHT Awareness video

  • Supported the 9th International HHT Scientific & Research Conference in Antalya, Turkey

2010

  • Launched first non-surgical Multi-Center Clinical Research study on Nosebleed treatments

  • Expanded to 14 HHT Centers of Excellence in North America
  • HHT Diagnosis and Treatment Act (DATA Act) was introduced in the House and Senate

2009

  • Managed HHT collaborative process for cerebral AVM NIH Consortia Grant. Cure HHT was the catalyst in establishing HHT Brain Vascular Research Consortia funded at NIH to understand the predictability or brain hemorrhage

  • Passage of the HHT Resolutions in United States Congress declaring June as National HHT Awareness Month

2008

  • Funded 4 HHT research grants totalling $170,000

  • Appointment of first Cure HHT Medical Director, Dr. James Gossage, Augusta University

  • Committed to add two new centers of excellence annually to increase patient access to expert care throughout North America

  • First CDC sponsored HHT conference focused on Determining the true prevalence of HHT in the US, Early HHT identification and intervention by health care professionals, and Adoption and Dissemination of HHT Clinical Guidelines.

2007

  • Funded first nosebleed patient assessment tool (Epistaxis Severity Score)

  • Total of 11 HHT Centers of Excellence in North America
  • Hosted first of 7 Capitol Hill Days in Washington DC to educate lawmakers and explain financial impact of HHT on healthcare system to gain HHT federal recognition and funding

2006

  • Funded 4 HHT research grants, totalling $200,000

  • Sponsored the First HHT Clinical Guidelines Conference, which resulted in an HHT International general consensus in diagnosing, screening and treating HHT and is a guidebook for HHT diagnosis, treatment, and management

  • Collaborated with NIH to sponsor an NIH Conference which identified priorities for HHT research

2004

  • Established the Dr. Robert I. White, Jr. Young Clinician Award to recognize Dr. White's vision in establishing the foundation, mentoring young HHT physicians around the world and his compassionate care of patients
  • Expanded to 9 HHT Centers of Excellence in North America
  • Awarded the first HHT research funding, $55,000 for Basic and Clinical research

2003

  • Obtained Release of HHT Gene Patents, making genetic testing possible for all patients in North America.
  • Funded 3 genetic testing laboratories in North America
  • First HHT Capital Research Funding Campaign launched
  • HHT Research Grant Program established

1996

  • Total of 3 HHT Centers of Excellence in North America 

  • HHT article published in the New England Journal of Medicine

1992

  • First Patient & Family Conference held in Columbus, Ohio

  • First Scientific and Medical Advisory Board established

1991

  • HHT Foundation International, Inc. established by Dr. Robert I. White, Dr. Bruce Jacobson and a small group of patients

  • First HHT Center of Excellence established at Yale University School of Medicine by Dr. Robert I. White