Our Impact

Continuing to lead the way...

Our current initiatives

• Cure HHT launches centralized biorepository, enabling researches from around the country to access critically needed HHT tissue to advance disease understanding.  
• NIH-sponsored PATH trial becomes first positive, large-scale study in HHT. 
• PATH trial results published in the New England Journal of Medicine. 
• Helped Diagonal Therapeutics secure $128 million in Series A funding to support their HHT program.  
• With our support, Vaderis Therapeutics announces first positive industry-led trial for HHT. 
• Hosts National Patient & Physician Conference outside Philadelphia, setting records for attendance. 
• HHT Connect, first ever patient registry, rolled out to community. 
• Holds Congressional Brief inside U.S. Capitol building as part of HHT Capitol Hill Day. 
• Provided seed grant to Broad Institute of MIT & Harvard to study precision therapy to reverse disease. 
• Held first HHT Continuing Education in-person event in Nashville with over 20 providers present. 
• Protected Federal Funding for the third year in challenging advocacy environment; funding to date has led to a 44% increase in new patients seen at Centers of Excellence.  
• Hosts 15th International HHT Scientific Conference, with more than 300 attendees gathering. 
• Hosts HHT Kids Day in partnership with UCSF in San Francisco. 
• UC San Diego Health re-certified as an HHT Center of Excellence. 

• HHT Patient & Physician Regional Conferences resume for the first time post-pandemic in Denver, Colorado.
• HHT Patient & Physician National Conferences resume for the first time post-pandemic in Seattle, Washington (to be held in June 2023).
• PAZ clinical trial recruitment set to begin.
• HHT Patient Registry set to launch.
• Clinical Outcomes Registry (CHORUS) set to launch.
• Online Continuing Medical Education Program set to launch.

• Secured for the first-time federal funding for U.S. HHT Centers of Excellence – after more than 15 years of advocacy efforts, HHT was included in the final Appropriations spending bill signed into law by President Biden, helping to increase patient access to care, driving the number of new diagnoses, and enabling centers to invest in their programs.
  
  
• Hosted our 14^th HHT International Scientific Conference in Portugal, bringing together a record-breaking 282 of the world’s leading HHT experts over the four-day event to push the boundaries in research, therapeutics, genetics and more.
  
  
• Awarded 40 Young Scholarship Travel grants to rising clinicians and researchers to attend our international conference to help inspire them to focus their careers on HHT.
  
  
• Made possible through our Chan Zuckerberg Initiative grant, hosted the 1^st Cure HHT Research Network (CHRN) convening in Boston, MA – where patient advocates and 75 of the world’s leading HHT clinicians, researchers and scientists developed a roadmap to prioritize research over the next 3-5 years. 
  
  
• Created a new “Therapeutic Development Arm” of Cure HHT – hiring new critical talent and creating dedicated roles to allow us to more directly accelerate and own the search for better treatments and one day, a cure. 
  
  
• Partnered with several leading institutions to help recruit for many important studies, helping to advance our understanding of HHT. This included Johns Hopkins Quality of Life study, Augusta University’s study of Telangiectasia, University of North Carolina’s menstrual bleeding study, and many more. 
  
  
• Hosted first virtual HHT Academy Patient & Physician conference – a 9-day learning extravaganza that featured a mix of patient and physician focused tracks, meet-and-greets, targeted Q&As with HHT experts and more. 
  
  
• Certified new HHT Center of Excellence in the U.S. at the University of Florida, helping to expand patient access to specialized and expert multidisciplinary care.  
  
  
• Cure HHT Awarded $50,000 research grant to Johns Hopkins (Dr. Clifford Weiss, PI) for the creation of a Standardized, Validated Quality of Life Metric for HHT. The HHT community participated in survey.

• Celebrated 30^th Anniversary
  
  
• Opened 30^th HHT CoE in North America at Barrow Neurological Institute.
  
  
• Guidelines webinar series – physician/patient panelists highlighted newly published guidelines (10 English speaking and 6 Spanish speaking webinars).
  
  
• Launched International Expert Clinical Case series (IECC) – hosted by an HHT CoE on specific topic area every other month in response to requests from our medical and scientific community for more discussion and collaboration. Cure HHT launched this series of virtual meetings to serve as a platform for the medical community to discuss challenging HHT clinical cases in an interactive format.
  
  
• Received funding from the Department of Defense office of the Congressionally Directed Medical Research Programs (CDMRP), as well as Peer Reviewed Medical Research Program (PRMRP) Clinical Trial Award application for Randomized Trial for Pazopanib in HHT-Related Bleeding (clinical trial to begin recruitment in 2023).
  
  
• CDC Public Health Webinar Series on Blood Disorders “Hereditary Hemorrhagic Telangiectasia in 2021: Diagnosis and Advances in Treatment” presented by Dr. Raj Kathuri (UNC) and Dr. Hanny Al-Samkari (MGH).
  
  
• Over 12 known HHT presentations at national professional society meetings internationally, including the United States, Canada, India, Africa, and Japan.

• Cure HHT selected as 1 of only 30 organizations to participate in the Chan Zuckerberg Initiative’s (CZI) Rare As One Network, providing funding, tools, expansion support, and training to create a larger, more integrated HHT community!
  
  
• Launched the Cure HHT Research Network, an HHT patient-led research network that encourages the sharing of ideas among patients, scientists, and physicians.
  
  
• Provided community support during the COVID-19 pandemic, including reporting updates and recommendations of the Centers of Disease Control (“CDC”) and the World Health Organization (“WHO”), as well as HHT specific recommendations from our HHT specialists nationwide.
  
  
• Launched the redesigned Cure HHT Resource Library, providing a more user-friendly experience for both patients and health care providers alike and broken down by topic area.
  
  
• First HHT Awareness billboard (24-foot-wide) displayed for several weeks during June Awareness Month. The "More Than Just a Nosebleed" billboard was perched on Route 50 in Maryland, the most traveled highway to all the Maryland beaches where approximately 30,000 cars passed this sign every single day, which amounted to approximately half a million people! Thank you to General Mechanical Services, LLC, Greg Lilly, Owner. 
  
  
• Launched the first worldwide virtual walk, Strides for Strength, bringing together HHT families, patients and physicians from around the world like never before.
  
  
• Facilitated the publication of the "Second International Guidelines for the Diagnosis and Management of Hereditary Hemorrhagic Telangiectasia," in the Annals of Internal Medicine. The guidelines set the standard for HHT care internationally.
  
  
• Partnered with Sanguina, a company working to make tools for patients with chronic anemia, including the AnemoCheck Mobile app, for at-home testing of the diagnosis of anemia, as well as real time testing for people who want to track their own hemoglobin levels at home.

• Facilitated the 2019 Christopher McMahon Memorial International HHT Guidelines Conference in Toronto, Canada, which was funded by a generous donation by the McMahon family. The conference sets the standard of care for HHT internationally, and included 36 recommendations for screenings, diagnosis and treatment of HHT, and will result in long awaited protocols for pediatrics, pregnancy, anemia, gastrointestinal bleeding, liver AVMs and cardiac involvement.
• Opened 2 new Centers of Excellence (CoEs) in North America, including Winnipeg HHT CoE and Stanford Medical Center.
• 13th annual HHT International Conference held in Puerto Rico that included over 200 scientists, medical professionals and patients from 21 countries and 6 continents.

• Brought awareness to HHT with major coverage in The New York Times and The Washington Post.
  
• Launched new Cure HHT website featuring comprehensive resource library, educational materials and research for global HHT community.

• Released My HHT Tracker, the first free HHT iOS app, for HHT patients to track nosebleeds and other critical medical information and securely share with physicians.

• 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 12^th 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

• 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

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

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

• 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 20^th HHT Center of Excellence established in North America

• Supported the nosebleed study in collaboration with Stanford University

• Began providing educational HHT Webinars

• Expanded to 19 HHT Centers of Excellence in North America

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

• Funded 1 HHT research grant totalling $35,000

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

• Funded 1 HHT research grant totalling $50,000

• Conducted Continuing Medical Education Courses to physicians and healthcare professionals

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

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

• 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

• 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

• 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.

• 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

• 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

• 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

• 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

• Total of 3 HHT Centers of Excellence in North America 

• HHT article published in the New England Journal of Medicine

• First Patient & Family Conference held in Columbus, Ohio

• First Scientific and Medical Advisory Board established

• 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