arrow

From NeuroLex

Jump to: navigation, search



Resource:Angioma Alliance

Name: Resource:Angioma Alliance
Description: 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.
Abbreviation: Angioma Alliance
Parent Organization: Resource:Angioma Alliance
Resource Type(s): Disease-related portal, Meeting resource
Resource: Resource
URL: http://angioma.org/
*Id: nlx_143720
Keywords: Cerebral cavernous malformation, Cavernous angioma, Rare disorder, Rare disease, Cavernous malformation
Link to OWL / RDF: Download this content as OWL/RDF

Parts of Resource:Angioma Alliance

Curation status: Curated

For Resource Owners:

A sitemap will keep your NIF Registry description up-to-date and inform search engines about your resource.

Please login to create the sitemap. (top right)

Learn more about what NIF can do for your resource.
Proudly proclaim your inclusion in NIF by displaying the "Registered with NIF" button on your site.

Notes

This page uses this default form:Resource

Contributors

Aarnaud



bookmark

*Note: Neurolex imports many terms and their ids from existing community ontologies, e.g., the Gene Ontology. Neurolex, however, is a dynamic site and any content beyond the identifier should not be presumed to reflect the content or views of the source ontology. Users should consult with the authoritative source for each ontology for current information.

Facts about Resource:Angioma AllianceRDF feed
AbbrevAngioma Alliance  +
CurationStatusuncurated  +
DefiningCitationhttp://angioma.org/  +
DefinitionEstablished in 2002, Angioma Alliance is a 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.
please consider joining us in our effort.
ExampleImageAngioma Alliance.PNG  +
Has default formThis property is a special property in this wiki.Resource  +
Has roleDisease-related portal  +, and Meeting resource  +
Idnlx_143720  +
Is part ofResource:Angioma Alliance  +
KeywordsCerebral cavernous malformation  +, Cavernous angioma  +, Rare disorder  +, Rare disease  +, and Cavernous malformation  +
LabelResource:Angioma Alliance  +
ModifiedDate14 November 2011  +
Page has default formThis property is a special property in this wiki.Resource  +
SuperCategoryResource  +