About Cure HHT
Since 1991, Cure HHT has been the cornerstone of the hereditary hemorrhagic telangiectasia (HHT) community. We fund the research, build the care network, and stand with the families working toward a cure.
Our Mission
Find a cure for HHT while saving lives through research, education, and collaboration
Our mission is to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT.
To achieve this mission, Cure HHT will:
01
Fund research to find better treatments and a cure.
02
Educate families and physicians about HHT so that awareness of crucial diagnosis and available treatments prevents needless disability and death.
03
Provide linkages between people affected by HHT.
04
Collaborate with multidisciplinary HHT Treatment Centers worldwide while advocating for patient access to these Centers.
05
Advocate for and support those with HHT while increasing public, private, and governmental awareness of the disorder.
06
Engage the scientific and medical community so that talented individuals dedicate efforts toward advances in HHT screening, diagnosis, treatment, and research.
Our Goals
Find. Treat. Cure.
Three goals shape every decision we make, from the grants we fund to the centers we accredit.
Find.
Dramatically reduce the number of undiagnosed cases of HHT through focused awareness to the public and medical community. Cure HHT provides a supportive environment for those who are diagnosed and provide opportunities for people to connect to others who share similar experiences and concerns.
Treat.
Significantly expand the availability and accessibility to consistent, quality care. We seek to educate physicians and healthcare professionals to recognize HHT and refer for diagnosis and screening. The HHT Center of Excellence model, featuring multi-discipline specialists working together to treat patients and families, has been emulated throughout the world. We strive to accelerate advances in clinical care.
Cure.
Through our collaborations with physicians and scientists, we look to set the global agenda for finding more effective HHT treatments. Cure HHT invests in breakthrough research and supports the best science worldwide to uncover the mechanisms underlying HHT, improve treatments and ultimately, to find a cure. Dedicated and unrelenting, Cure HHT is constantly working to ensure HHT patients and families can live long and productive lives full of joy and spontaneity.
Since 1991
The Cornerstone of the HHT Community
Renamed Cure HHT in 2014, the HHT Foundation International was founded by a tenacious and passionate group of patient families and physicians, who shared a hope for a better future for those with HHT.
Since its establishment in 1991, Cure HHT has consistently been at the center of the national and global effort to advocate for patients and families, raise awareness of HHT, guide and fund critical research, create lasting collaborations and encourage scientists to work on new treatments. Cure HHT has the perseverance and experience to integrate and drive vital progress across the patient, medical and scientific communities.
HHT By The Numbers
1 in 4,000
People worldwide live with HHT
80%
Remain undiagnosed today
55+
HHT Centers of Excellence worldwide
27 years
Average delay before diagnosis
The Team
Foundation Staff
The people working every day to build a better future for those with HHT.
Marianne Clancy, MPA
CEO and Managing Director, Strategic Partnerships
Adrienne Barton, CFRE
Chief Operating Officer
Nicole Schaefer
Chief Administrative Officer
Tania Competiello
Senior Director, National Healthcare Programs
Crystal Cottrill
Manager, National Healthcare Programs
Cassi Friday, PhD
Senior Director, Research Programs and Grants
Daneil Johnston
Grants & Finance Specialist
Cathleen Kinnear
Operations & Business Systems Associate
Nolie Krock
Clinical Care Network and Research Grant Consultant
Talia Lewis
Manager, Marketing & Digital Engagement
Phyllis Loveland
Senior Manager, Community Engagement
Valaree Machen, MS
Director, Marketing and Communications
Ellie Olitsky, MBA
Community Manager
Scott Olitsky, MD, MBA
Global Center of Excellence and Outreach Director
Katy O’Toole
Director, Major Gifts
Kassidy Swords
Research Coordinator
Clinical & Scientific Advisors
Murali Chakinala, MD
Senior Clinical Research Advisor
Marie Faughnan, MD, MSc
Vice Chair, North American Scientific and Medical Advisory Council
James Gossage, MD
Vice Chair, Center of Excellence Executive Committee
Christopher C.W. Hughes, PhD
Chair, North American Scientific and Medical Advisory Council
Board of Trustees
Terry Thompson, MBA
Chair
Bedminster, NJ
Gabriella Choi, MBA
Vice Chair
Venice, CA
Michael Nolan
Treasurer
Cork, Ireland
Anthony Anzell, PhD
Secretary
St. Louis, MO
John Dunn, MA
Trustee
Scotts Valley, CA
Hara Levy, MD, MMSc
Trustee
Glendale, WI
Douglas Marchuk, PhD
Trustee
Chapel Hill, NC
Brandon Probst, PhD
Trustee
Lehi, UT
William Sellers, MD
Trustee
Chestnut Hill, MA
Dennis Sprecher, MD
Consulting Trustee
Bluebell, PA
Dennis Routledge
Trustee Emeritus
Somerset, NJ
Scientific Guidance
Global Research and Medical Advisory Board
Forty clinicians and scientists across fourteen countries guide the research agenda and the standards behind the HHT Centers of Excellence.
Hanny Al-Samkari, MD
Chair · Hematology
Massachusetts General Hospital
Franck Lebrin, PhD
Vice-Chair · Basic Science
Leiden University
Rosemary Akhurst, PhD
Basic Science
University of California, San Francisco
Sabine Bailly, PhD
Basic Science
INSERM Grenoble
Pinar Bayrak-Toydemir, PhD
Genetics
ARUP Labs
Luisa Maria Botella, PhD
Scientist
Centro Investigaciones Biologicas, CSIC
Murali Chakinala, MD, FCCP
Pulmonology
Washington University School of Medicine
Mark S. Chesnutt, MD
Pulmonology
Dotter Interventional Institute, Oregon Health and Science University
Miles Conrad, MD
Interventional Radiology
University of California, San Francisco
Sophie Dupuis-Girod, MD, PhD
Genetics
Lyon, France
Marie E. Faughnan, MD, MSc
Pulmonology
University of Toronto
Urban W. Geisthoff, MD
Otolaryngology
University of Marburg, Germany
James Gossage, MD
Pulmonology
Augusta University
Steven Hetts, MD
Neuroradiology
University of California, San Francisco
Christopher C. W. Hughes, PhD
Vascular Biology
University of California, Irvine
Raj Kasthuri, MD
Hematology
University of North Carolina, Chapel Hill
Anette Kjeldsen, MD
Otolaryngology
Odense University
Masaki Komiyama, MD
Neuro-Interventional Radiology
Osaka City General Hospital
Hans-Jurgen Mager, MD
Hematology
Massachusetts General Hospital
Guido Manfredi, MD
Hepatology
Maggiore Hospital Crema, Italy
Philippe Marambaud, PhD
Basic Science
Feinstein Institute Northwell Health
Keith McCrae, MD
Hematology
Cleveland Clinic
Jamie McDonald, MS, CGC
Genetic Counselor
University of Utah
Stryder Meadows, PhD
Basic Science
Tulane University
Meir Mei-Zahav, MD
Pediatrics
Schneider Children’s Hospital, Israel
S. Paul Oh, PhD
Basic Science
Barrow Neurological Institute
Michael Ohliger, MD, PhD
Radiology and Biomedical Imaging
University of California, San Francisco
Roxana Ola, PhD
Basic Science
Heidelberg University
Jeffrey Pollak, MD
Interventional Radiology
Yale University
Marco Post, MD, PhD
Cardiology, PAH
St. Antonius Hospital
Felix Ratjen, MD, FRCP
Pediatrics
Toronto Sick Kids Hospital
Beth L. Roman, PhD
Basic Science
University of Pittsburgh
Bethany Samuelson-Bannow, MD
Hematology
Cleveland Clinic
Bill Sellers, MD
Cancer Research
Broad Institute
Marcelo Serra, MD
Internal Medicine
Hospital Italiano
Edda Spiekerkoetter, MD
Pulmonology, PAH
Stanford
Mickael Tanter, PhD
Biomedical Imaging & Ultrasound
Paris
Andrew White, MD
Pediatrics
St. Louis Children’s Hospital
Ingrid Winship, MDChB, MD, FRACP, FACD
Genetics
Royal Melbourne
Lawrence H. Young, MD
Cardiology
Yale University