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HHT and Your Physician

Commonly Asked Questions

Cure HHT does not provide medical advice, nor does the printing of these answers constitute medical advice. For professional advice consult your medical caregiver.

Can you recommend a doctor in my area who specializes in HHT?

We recommend that all people with HHT be evaluated at least once at one of the HHT Treatment Centers. HHT is a multi-organ disorder and the teams at these centers are able to diagnose and treat all aspects of the disorder. The Cure HHT Physician Directory was created to help patients and their families find a medical professional in the United States and Canada who is knowledgeable about the diagnosis, treatment and management of this rare disease. It contains doctors associated with the HHT Centers of Excellence as well as doctors and medical personnel that treat HHT in their community. Cure HHT provides this information as a service to patients and does not specifically endorse any individual physician. All information has been provided by the doctors so patients can make their own assessment of each doctors' qualifications. 

My family physician is interested in getting information about taking care of a patient with HHT. Is there a standard protocol that should be followed?

Yes. The International HHT Clinical Guidelines should be the main source for standardized care. Cure HHT has created checklists for nosebleed management, brain AVMs and lung AVMs, the most common symptoms of HHT.

We would be happy to send your physician additional information package; call Cure HHT at 410-357-9932 with your physician's contact information. In the meantime, ask your doctor to review the resources available on our resource library.

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