Meet Cure HHT
Cure HTT is the foremost charity for Hereditary Hemorrhagic Telangiectasia (HHT), an organization devoted to finding a cure for this disease and making life easier for HHT patients.
What is Cure HHT?
Cure HHT was founded in 1991 as the HHT Foundation International, Inc. The first HHT Center of Excellence was established in the same year by the organization's co-founder, Dr. Robert I. White.
Within 5 years, there were three HHT Centers of Excellence operating in North America and this number had grown to 9 by 2004 and 25 by 2016.
Cure HHT provides advocacy, help, support, and assistance for the HHT community. Its HHT research initiatives have played a major role in increasing national and global awareness of the condition and ensuring that patients are adequately educated and treated.
Some of the initiatives established by Cure HHT have included:
- Launched the Cure HHT Research Network, a patient-led network where ideas are freely shared by patients, families, and healthcare professionals.
- One of the 30 organizations selected as part of the Rare as One Network by the Chan Zuckerberg Initiative.
- Stages an annual HHT International Conference, inviting scientists, patients, and medical professionals from over 20 countries.
- Released the My HHT Tracker app to help patients track nosebleeds and other symptoms.
- Runs dozens of webinars targeted toward patients and their loved ones.
- Has received coverage from major media publications and has also paid for billboards and other advertising campaigns.
- Operates the Cure HHT website, a fantastic source of information relating to this disease.
- Invests in young scholars via initiatives like the Young Scholar Research Program.
- Has lobbied tirelessly for funding into HHT care and research.
Cure HHT's Goal
There is no known cure for HHT. We can treat the symptoms and assist HHT patients in living a long and healthy life, but we can't prevent or cure the disease itself.
Cure HHT is trying to change that, and while there is still a long road ahead, it's edging ever closer to its goal every day.
Cure HHT aims to achieve this goal through the following means:
- Fund research into HHT treatments and potential cures. In comparison to other genetic disorders, very little government funding goes toward HHT, but Cure HHT is still making progress.
- Educate healthcare providers and HHT patients. HHT is often misdiagnosed, and to fix that problem, physicians, care providers, and patients must be educated on the disorder.
- Collaborate with HHT centers around the world. Lofty goals such as curing and treating HHT can only be attained when many researchers, scientists, and medical professionals put their heads together.
- Support individuals with HHT, as well as their families.
- Serve as an advocate for HHT patients and for all families affected by this disease.
- Work with the medical and scientific communities to push for support, treatments, and research into Hereditary Hemorrhagic Telangiectasia.
Cure HHT Guidelines
Cure HHT publishes International HHT Guidelines relating to HHT care. These guidelines govern care in every HHT Center of Excellence and refer to methods of diagnosing, screening, treating, and assisting those with HHT.
You can find a complete list of International HHT Guidelines on the Cure HHT website.