• ORGANIZATION PROFILE
  • Angioma Alliance Angioma Alliance

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(36.8536,-76.2896)
 

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Mission Statement

It is our mission to inform and support individuals affected by cerebral cavernous angiomas while facilitating improved diagnosis and management of the illness through education and research.

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 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.

Famous people with the condition have included the late track star Florence Griffith Joyner, current Tour de France winner Alberto Contador, former Houston Astros manager Larry Dierker, and former Arkansas Razorbacks football coach Danny Nutt.

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.

Objectives

a. Disseminate patient information to practitioners in multiple medical disciplines.

b. Maintain a website that contains the best information and support available to those affected by cerebral cavernous angiomas and expand the site to meet expressed member needs.

c. Host a periodic family conference for those affected by cerebral cavernous angiomas as well as researchers to provide education and support.

d. Provide a program of one-on-one support to include trained volunteers who can provide one-to-one email and phone support to newcomers.

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.

Objectives

a. Establish a Tissue/DNA Bank and Patient Registry, continue to fund it, and promote participation through members and surgeons.

b. Encourage collaborative relationships among researchers by strategically inviting researchers to participate in committees, conferences, and projects.

c. Advocate for additional government research funding.

d. Encourage the development of clinical data gathering guidelines.

Goal 3: Physician Education: To ensure that all appropriate physicians are aware of cerebral cavernous angiomas and have ready access to the latest information to provide an accurate diagnosis and effective treatment.

Objectives

a. Facilitate or develop continuing medical education courses to physicians.

b. Fund annual Neurology Residents Award to increase clinical knowledge of cerebral cavernous angiomas.

c. Maintain an active presence at strategically beneficial medical conferences attended by neurologists and neurosurgeons.

d. Recruit neurologists and neurosurgeons to present at strategically beneficial medical conferences.

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

Objectives

a. Reach out to mass media outlets to document and publish member stories.

b. Foster internet linking relationships to drive traffic to our website.

Website

http://www.angiomaalliance.org

Contact

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