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.
Associazione Italiana Angiomi Cavernosi (AIAC) Onlus – Web: https://www.aiac.unito.it
Facebook: https://www.
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
