Cure HHT Launches Free Redesigned and Expanded Resource Library: Centralized Hub for Patient and Medical Provider Information Worldwide on the Rare Disease HHT

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After months of collaboration between physicians and specialists, patient feedback, and the vetting of an entire inventory of new and updated HHT resources, Cure HHT has launched an expanded and redesigned free online Resource Library easily accessible to patients, their families and medical providers worldwide. Cure HHT is the largest HHT advocacy organization and the epicenter of the national and global effort to advocate for HHT patients and families, raise awareness, sponsor critical research, advance treatments and find a cure. The Cure HHT Resource Library can be accessed here: https://curehht.org/resource-library/

A Sample of the Cure HHT Resource Library Topics

“The new Resource Library significantly advances one of our primary programmatic goals of educating both patients and medical providers about this complicated and unrelenting disease that can impact entire families for generations,” states Marianne Clancy, Executive Director of Cure HHT.

After months of collaboration between physicians and specialists, patient feedback, and the vetting of an entire inventory of new and updated HHT resources, Cure HHT has launched an expanded and redesigned free online Resource Library easily accessible to patients, their families and medical providers worldwide. Cure HHT is the largest HHT advocacy organization and the epicenter of the national and global effort to advocate for HHT patients and families, raise awareness, sponsor critical research, advance treatments and find a cure. The Cure HHT Resource Library can be accessed here: https://curehht.org/resource-library/

HHT (Hereditary Hemorrhagic Telangiectasia), also known as Osler-Weber-Rendu Syndrome, is a genetic disease that affects families for generations. As common as ALS (Lou Gehrig’s Disease), HHT affects 1 in 5,000 people, an estimated 1.4 million worldwide, but the disease is not well known and only 10% of those with HHT have been diagnosed. It causes malformed blood vessels in multiple organs of the body and typically begins with nosebleeds during childhood. HHT can result in stroke, brain abscess, anemia and heart failure, but proper diagnosis and treatment can prevent most of these complications.

The user-friendly Resource Library offers separate gateways for Patients and Providers, and facilitates the search for critical information with a “Quick Topic Access” button. The Patient Resources section aids the newly diagnosed, the knowledgeable patient or those in between. Whereas the Physician Resources are helps medical professionals navigate an HHT diagnosis for their patients with peer-reviewed and published articles, as well as simple facts to breakthrough to diagnosis. With fifteen common HHT topic areas including Anemia, Drug Therapy, Insurance and Mental Health to name a few, each category has its own section of resources to help guide user to the answers they need. For those looking for very specific articles and resources, the Resource Library also hosts an Advanced Search feature to dive deeper into a given topic area.

“The new Resource Library significantly advances one of our primary programmatic goals of educating both patients and medical providers about this complicated and unrelenting disease that can impact entire families for generations,” states Marianne Clancy, Executive Director of Cure HHT. “The more educated and aware people are about HHT, the more we can find those who may be suffering unaware, and the faster we can advance treatments and our mission to find a cure. It all starts with awareness.”

Cure HHT is the only disease advocacy group supporting HHT patients in the United States, and the only one working across international boundaries. It sponsors and produces the biennial International Scientific Research Conference, most recently held in Puerto Rico in 2019, which brings together patients, scientists and physicians and provides an opportunity for cross-fertilization of ideas and research. It also sponsors and produces The International Clinical Guidelines Conference, held most recently in Toronto in 2019, which sets the standards of care for HHT internationally, with new Guidelines to be released in June of this year. Cure HHT has helped leverage more than $34 million in research grants since 2004, and has created and monitors 28 HHT Centers of Excellence at hospitals and universities in North America.

Most recently, Cure HHT was honored to receive a two-year capacity-building grant from the Chan Zuckerberg Initiative’s “Rare As One” Project to develop a patient-led Research Network which will accelerate its mission to find new treatments and a cure for the disease. A key driver of its success as the only international patient-led advocacy group supporting HHT patients has been its constant focus on collaboration between physicians, scientists and patients.

“The Resource Library is a meeting ground for the exchange of information between the entire HHT community, “ comments Clancy. “It includes an incredible range of fact sheets, videos, webinars, newsletters, and scientific literature. Related items will also be accessible on each topic page including blog posts, news, and events. I am thrilled to see it launch after the extensive work to make it the comprehensive resource for HHT information online.”    

For information, visit http://www.curehht.org call 410-357-9932 or connect on Twitter or Facebook.

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Editors Note:     

  • Additional background on HHT and Cure HHT available on request.
  • Interviews are available with Marianne Clancy and with experts at the 26 HHT North American Centers of Excellence including Augusta University; Cincinnati Children's Hospital Medical Center; Cleveland Clinic; Froedtert & Medical College of Wisconsin in Milwaukee; Johns Hopkins in Baltimore, MD; Massachusetts General Hospital; Mayo Clinic - Rochester Minnesota; New York-Presbyterian Hospital / Columbia University Irving Medical Center; Oregon Health and Science University; Stanford Health Care; University of Arkansas Medical Sciences; University of California San Francisco; University of California, Los Angeles; University of Chicago Medical Center; University of Colorado Hospital; University of North Carolina; University of Pennsylvania; University of Texas Southwestern; University of Utah Medical Center; UPMC and The University of Pittsburgh; Washington University School of Medicine, in St Louis, MO; Yale University School of Medicine; and in Canada in Edmonton, Montreal, Toronto, and Winnipeg.

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