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Angioma Alliance

Established in 2002, Angioma Alliance is a patient-driven, non-profit patient advocacy organization. Our mission is to inform and support individuals affected by cerebral cavernous malformations while facilitating improved diagnosis and management of the illness through education and research. We are 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, peer support program, 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. Third, we have needed a way to connect with the research community. Angioma Alliance can be as active and effective as those who choose to volunteer. If you or a family member or friend is affected by cavernous angioma, please consider joining us in our effort.

URL: http://angioma.org/

Resource ID: nlx_143720     Resource Type: Resource     Version: Latest Version

Keywords

cerebral cavernous malformation, cavernous angioma, rare disorder, rare disease, cavernous malformation

Abbreviation

Angioma Alliance

Curation Status

uncurated

Additional Resource Types

disease-related portal, meeting resource

Supercategory

Resource

Resource Status

Last checked up;

Parent Organization

Original Submitter

Anonymous

Version Status

Curated

Submitted On

12:00am November 14, 2011

Originated From

SciCrunch

Changes from Previous Version

First Version

Version 1

Created 3 years ago by Anonymous