CARCINOID CANCER AWARENESS NETWORK INC
This nonprofit organization is run by a wonderful person that is unbelievably committed to the her cause. Maryann Wahmann spends so much time focused upon increasing the awareness of Carcinoid Cancer and goes far beyond what one would expect for any patient that seek education. A truly worthy cause.
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CCAN is the result of a truly dedicated team focused on the support of Carcinoid/Neuroendocrine patients and their families.
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I've participated in a patient-oriented conference sponsored by CCAN.
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Perhaps the single suggestion one could make would be to ensure that NET physicians are available to discuss specific patient questions as they are raised. I recall reading with some pain the story of a patient who travelled to South America for surgery for a Carcinoid lesion of the heart when 5 prior patients with a similar problem had been managed with targeted nonsurgical therapy by the Mt. Sinai team in NYC. This type of patient could benefit from appropriate physician input at a critical time.