International Organizations

Sister organizations exist around the world. If you are reading this from outside of the United States, please feel free to use our resources, but also find your country’s patient group below. They need you.

Join the Patient Registry

Join patients around the world in building the Registry community.

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European Cavernoma Alliance

ECA is a federation of European patient advocacy organizations working together to improve care for cavernous malformation patients across Europe and to support research.

Their website with links to each member organization’s site:  European Cavernoma Alliance

Facebook page: https://www.facebook.com/EuropeanCavernomaAlliance/

Twitter:  https://twitter.com/EuropeCavernoma

Australia

On Facebook – a group that was started by Australians and has grown to be international: Cavernoma Support Group

Belgium

Vascular Anomaly Patient Association: VASCAPA

Brazil

Visit the Brazilian website:  http://www.cavernoma.org.br/

Brazilian Facebook page: https://www.facebook.com/Aliancacavernomabrasil

Canada

Visit Cavernous Malformation Canada

Canadian Facebook:  Cavernous Malformation Canada

Facebook Discussion Group: Cavernous Malformation Canada

For European Members (especially where no country group exists)

On Facebook:  Europe – Cavernous Angioma Support Group

France

Association sur les Cavernomes Cérébraux: http://association-cavernome-cerebral.e-monsite.com/

Facebook discussion group: La cavernomatose…maladie rare

Germany

Visit the German information website: http://cavernom.de/

India

Facebook discussion groups: https://www.facebook.com/groups/CavernousAngiomaAllianceIndia/

Ireland

On Facebook: Cavernoma Ireland (public page) and Cavernoma Ireland Support Group (private group)

Italy

ANACC ONLUS (l’associazione nazionale angioma cavernoso cerebrale): www.anacconlus.org
   Facebook: https://www.facebook.com/AngiomaCavernosoCerebraleLaCommunity/

CCM Italia (Italian Multidisciplinary Research Network): https://www.ccmitalia.unito.it

Associazione Italiana Angiomi Cavernosi (AIAC) Onlus – Web: https://www.aiac.unito.it;
Facebook: https://www.facebook.com/AIAC-Associazione-Italiana-Angiomi-Cavernosi-212620812109830/

Latin America

On Facebook: Alliance to Cure Cavernous Malformation Latinoamerica

Philippines

On Facebook: Cavernoma Support Group Philippines

Portugal

Cavernoma Portugal:
Website:  Cavernoma Portugal
On Facebook: Cavernoma Portugal Facebook
Email: info@cavernoma.pt

South Africa

On Facebook: Living with Cavernoma South Africa

Spain

Asociación Española de Cavernomas:

Web: www.cavernomas.org

Facebook: https://www.facebook.com/cavernomas/

Sweden

Cavernost Angioma Sverige (CASE)

Facebook: https://www.facebook.com/cavernostangiomsverige.case/

United Kingdom

Visit Cavernoma Alliance UK: http://www.cavernoma.org.uk/

Cavernoma Society: https://cavernomasociety.org.uk/

 

Updated 4.20.21

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