Highlighting 30 Years of Remarkable Achievement
With your support, Cure HHT has accomplished so much, and the best is yet to come! As we conclude our 30th Anniversary Year, we look back at just a few of the many successes we've had thanks to support of our community!
Together, we have built an amazing foundation – expanding expert clinical access, funding research, hosting scientific conferences, building awareness, identifying new treatments, and more. We have been building our capacity and we now have the momentum to take our work to the next level – and we need your help to keep that momentum going. Scroll down to review highlights of the past 30 years!
Cure HHT has significantly expanded access to treatment and care of the highest quality by creating and monitoring HHT Centers of Excellence – and we are continuing to create new centers every year!
With the addition of new HHT Centers of Excellence in Alabama, Arizona and Florida this year, Cure HHT will have developed 30 Centers of Excellence in North America.
From its beginning, Cure HHT has been dedicated to advancing the diagnosis and treatment of HHT to ensure that everyone has the chance to lead their best life. The progress we have made is a testament to your support.
Cure HHT has since: obtained the release of HHT gene patents, making genetic testing possible for all patients in North America; 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 set the standard of care for HHT internationally, and included 36 recommendations for screenings, diagnosis and treatment of HHT, and resulted in long awaited protocols for pediatrics, pregnancy, anemia, gastrointestinal bleeding, liver VMs and cardiac involvement; and facilitated the publication of the "Second International Guidelines for the Diagnosis and Management of Hereditary Hemorrhagic Telangiectasia," in the Annals of Internal Medicine reaching thousands of doctors worldwide, advancing our goal of educating medical professionals.
Your donations allow Cure HHT to provide seed money research grants and invest in the work of future scientists through programs like the Young Scholar Research Program. Those grants have helped researchers access millions of dollars in federal funding!
Since 2003, your donations of 1.5 million created seed money that secured 48.8 million of piggy-back funding. Additional funding from government agencies and pharmaceutical partners have collectively totaled 50.3 million in funding our mission to find, treat and cure HHT!
From our beginnings in 1991, founded by a tenacious and passionate group of patient families and physicians who shared a hope for a better future for those with HHT, Cure HHT has grown to be the leading international HHT patient advocacy organization. Our growth and success has created new opportunities for impact on a global scale.
Other capacity building milestones include Cure HHT being 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; and development of the Cure HHT Research Network, an HHT patient-led research network that encourages the sharing of ideas among patients, scientists, and physicians.
From the first Patient & Family Conference held in Columbus, Ohio in 1992, Cure HHT has become the host and convener of the biennial HHT International Scientific Conference. In 2019, the 13th conference in Puerto Rico brought together over 200 scientists, medical professionals and patients from 21 countries and 6 continents.
Other awareness milestones include the passage of the HHT Resolutions in United States Congress declaring June as National HHT Awareness Month; obtaining major coverage in The New York Times and The Washington Post; launching the new Cure HHT website featuring a comprehensive resource library, educational materials and research for the global HHT community; launched the first worldwide virtual walk, Strides for Strength, bringing together HHT families, patients and physicians like never before; and mounted the first HHT Awareness billboard, viewed by approximately half a million people!
A few highlights of the past 30 years of progress