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Angioma Alliance

Cause Area

  • Health & Medicine
  • People with Disabilities

Location

977 SEMINOLE TRL # 367Charlottesville, VA 22901 United States

Organization Information

Mission Statement

It is our mission to inform, support, and mobilize those affected by cerebral cavernous angioma (CCM) and drive research for better treatments and a cure.

Description

Angioma Alliance is a patient-directed advocacy organization for those affected by cerebral cavernous angiomas. Cerebral cavernous angiomas are relatively common tumor-like blood vessels in the brain and spinal cord that can hemorrhage and cause stroke-like deficits, seizure, and even death at any age. About 25% of those affected are diagnosed as children. Brain or spinal surgery is the only current treatment for the condition.

Our organization was founded in 2002 to achieve four goals:

Goal 1: Inform/Support: To use all available means to disseminate information about cerebral cavernous angiomas to those affected and their families, as well as establish a caring community to provide support.

Goal 2: Research: To advocate, facilitate and participate in cerebral cavernous angioma research in the pursuit of a complete understanding of the disease and, ultimately, a cure.

Goal 3: Physician Education:
To ensure that all appropriate physicians are aware of cerebral cavernous angiomas and have ready access to the latest inform

Goal 4: Public Awareness: To heighten public awareness of cerebral cavernous angiomas to increase understanding, acceptance and funding for research and services.

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