Angioma Alliance

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Angioma Alliance is a rapidly growing all-volunteer network founded in 2002 and dedicated to improving the lives of those affected by cavernous angioma. There are many needs that we have been addressing together. First and foremost, people diagnosed with cavernous angiomas have needed more information and a way to talk to others who have the illness. Physicians are frequently unfamiliar with the disease. Internet information has been scarce and technical, and until Angioma Alliance there had been no active internet forums. Many of us have never known anyone else with the illness. Angioma Alliance's website, toll free number, patient literature, family conferences, and medical convention exhibits have been providing vital information and opportunities for support to those of us affected by cavernous angioma and to the physicians who care for us. Second, we have needed to increase if the public awareness of cavernous angioma. Up to 3 million people in the United States have at least one cavernous angioma. Track star Florence Griffith Joyner died as a result of this illness. Former Houston Astros manager Larry Dierker had a public seizure followed by a craniotomy. Yet, the name "cavernous angioma" or "cavernous malformation" is not recognized by the vast majority of people, including most medical professionals. Increased public awareness may lead to earlier diagnosis for many. It can increase support and understanding of the illness from those not directly affected...

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