ANGIOMA ALLIANCE
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Mission Statement
Angioma Alliance, d/b/a Alliance to Cure Cavernous Malformation, is a patient advocacy and research organization for those affected by cerebral cavernous malformations (also known as cavernoma or cavernous angioma), an illness that causes stroke and seizure in children and adults. Our mission is to inform, support, and mobilize individuals affected by cavernous angioma and drive research for better treatments and a cure. We are advised by an international group of leading neurosurgeons, neurologists, and researchers.
About This Cause
Angioma Alliance, d/b/a Alliance to Cure Cavernous Malformation, was founded in 2002 and remains the only US-based patient advocacy and research organization for individuals affected by cerebral cavernous malformations, also known as cavernoma, cavernous angioma, or CCM. Cavernous malformations are abnormal brain and spinal cord blood vessels that can hemorrhage, causing stroke and seizure at any age. One in 500 individuals has at least one cavernous malformation; a smaller percentage become symptomatic. A quarter of those with the illness has a hereditary form that produces multiple cavernous malformations and leaves each of their children with a 50/50 chance of inheriting the illness. Cavernous malformations can only be treated with brain surgery, and hemorrhages can be devastating. Angioma Alliance remains a grassroots kitchen table organization, yet we have developed programs that have dramatically improved patients' lives and sped research toward a cure. These include: Research 1. A Cavernous Malformation Biobank allows our members to donate their surgically removed cavernous malformation and other biospecimens to us for use by research laboratories. We provide genetic testing and have created an extensive prospective clinical database as part of this project. 2. We organize and host the International Cavernous Angioma Scientific Meeting, which has been held annually since 2004. This is the premiere meeting for the illness, bringing together researchers from four continents, drug company representatives, and NIH/FDA officials to share unpublished data to move research more quickly from bench to bedside. Our meeting is responsible for multiple collaborations and publications and is a coordinating site for upcoming clinical trials. 3. We host the International Angioma Alliance Patient Registry, an online tool in which patients can register themselves to express their interest in participating in research. 4. We award grants to research labs. We fund cutting-edge research that is high risk and potentially high reward for our patients. 5. We are co-authors and collaborators on multiple research projects each year. Angioma Alliance employs a full-time geneticist who works closely with the international research community. 6. We work closely with companies and academic institutions sponsoring clinical trials of potential treatments for CCM. We are the advisors on clinical trial design and the primary recruiters to fill trials. Patient Education and Support 1. We provide extensive disease information for patients on our website. There is no other site with comparable depth and breadth. We publish a quarterly newsletter to keep patients up-to-date on the latest research. 2. We provide multiple opportunities for patients to support each other: online on our in Zoom meetings and moderated Facebook groups, in one-on-one email and phone support, in small group in-person meetings, and at larger national conferences. 3. We have supported the creation of sister organizations around the world. There are fully incorporated, active organizations or informal support groups in 21 countries. Care 1. We develop and recognize CCM Centers of Excellence and CCM Clinical Centers around the US. These are institutions where patients receive integrated multi-disciplinary expert care. 2. We work with our medical and scientific advisors to create and maintain Clinical Care Consensus Guidelines that inform patient care. Awareness 1. We host annual awareness events both in-person and virtually. 2. We have co-written and advocated for legislation increasing awareness of the illness. Legislation has passed in the state of New Mexico and the US Senate. 4. We actively pursue media coverage of our members primarily so that we can identify and support more affected individuals who may not be aware of the organization.