An HHT Center of Excellence is defined as a medical practice that provides comprehensive coordination of care necessary for treating HHT patients. The standard of care must meet or exceed the guidelines recognized by Cure HHT.
HHT centers proactively manage the care of patients with HHT with an integrated team of experts, knowledgeable about HHT. A full-time nurse will work closely with the specialists and a coordinator will be on-site to ensure proper follow-up and coordination of patients care throughout the center.
Each HHT center combine strengths of each specialty to treat the unique symptoms of HHT. You will have access to physicians who specialize in all aspects of HHT.
Cure HHT strongly encourages HHT centers to:
- Stay abreast of the latest HHT treatments
- Publish patient research results in medical journals and publications
- Give HHT patients information about the disease and how to become a Cure HHT member
- Complete an annual survey
- Update Cure HHT on any changes in staffing, phone numbers, etc. that occur
- Provide a copy of new journal publications produced
If this is your first visit to a treatment center, please review the About HHT tab to prepare for your visit.
If you are concerned about the financial responsibility of being seen at a center, click on the Resource tab to locate assistance.
Separate Institutions Working Toward a Common Goal
Every year, Cure HHT receives phone calls, emails and letters asking about the difference between the organization and the HHT Centers of Excellence. Cure HHT evaluates all hospitals who apply to become a center, ensuring the staff and specialists chosen to work with HHT patients are of the best quality and are able to handle the demands of treating HHT. Once the facility meets approval, Cure HHT assists in the launching and promotion process. However, it is important to note that the organization and each center are separate institutions, though we work collaboratively to advance the diagnosis, treatment and management of HHT but we are completely separate institutions.
The Benefits of Being Screened at an HHT Center of Excellence
At an HHT Center of Excellence, the specialists work with the disease on a daily basis and know what they are looking for. They will evaluate your whole body, not just a specific organ, and refer to other HHT specialists for advice if necessary.
There are numerous benefits to being screened at an HHT center but two of the most important include:
- Genetics/Family History - The Center Director (or Genetic Counselor) will help you trace HHT through the generations, as well as help other family members with HHT be identified.
- Guidance/Experienced Medical Resources for your local physician(s): Once you've been seen at an HHT center, your local physician can contact the HHT center physician(s) about your specific condition, including but not limited to, treatment recommendations, second opinions and clarifications of diagnosis and management options.