Remote second opinions: A guide for international patients
If you live outside the United States and want expert input on your CCM diagnosis or treatment plan, you don’t always need to travel. Several CCM Centers of Excellence and Clinical Centers in the Alliance to Cure network have dedicated global medicine or international patient services programs that can review your case remotely — often working alongside your local doctor.
Use this resource to connect with a CCM Center of Excellence or Clinical Center from outside the United States.
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
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
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: kavernome.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): https://www.anaccaps.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
mexico
Website: www.cavernomasmexico.org
Email: cavernomasmexico@gmail.com
Facebook: https://m.facebook.com/cavernomasmexico/
Instagram: https://www.instagram.com/cavernomasmexico
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
