Since its inception in 1991, Cure HHT has been working tirelessly to raise awareness about HHT, improve treatments, and increase patient access to care.
- 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 14th 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 1st 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 30th Anniversary
- Opened 30th 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 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
- 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 11th 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 20th 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 1st North American Outcomes Registry, $131,000
- Funded 1 HHT research grant totalling $35,000
Appointment of 1st 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 1st professional HHT Awareness video
Supported the 9th 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