Do you want to help us raise awareness?

28th February is Rare Disease Day, a global event dedicated to raising awareness for the 300 million people worldwide living with a rare disease.  You can help by:

• Sharing your story on social media with #IhaveCavernoma and #RareDiseaseDay!

• Sharing our social media posts! (Facebook & Instagram)

• Check for events in your country and participate if you can!

Our Rare Disease Day Campaigns

Rare Disease Day is an important day for us, especially for those who have the familial form of Cavernoma, which is officially classified as rare disease according to Orphanet.  But we think that even those with the sporadic form of Cavernoma should not feel left out, because sporadic Cavernoma are rarely symptomatic. This is why we are advocating for symptomatic sporadic cavernoma to be officially classified as rare disease as this would imply an entry in the Orphanet database and it would allow researchers to apply for rare disease funding.  

Orphanet is now reviewing this and we await a decision in July 2026!

14th June - Cavernoma Awareness Day