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Do you want to help us raise awareness?
Do you want to help us raise awareness?
Share your story on social media with #Cavernoma, #RareDiseaseDay and #HopeForACure!
Share our social media posts!
Check for events in your country and participate if you can!
28th February is Rare Disease Day, a global event dedicated to raising awareness for the 300 million people worldwide living with a rare disease. To mark this special day, we are sharing a brand-new video about cavernoma across Europe, and we need your help to amplify its reach!
How You Can Help:
Share it on your social media platforms with #RareDiseaseDay and #Cavernoma.
Encourage friends and family to do the same.
Together, we can shine a light on cavernoma and support the global rare disease community.
Let’s make this video go viral across Europe!
Our Rare Disease Day Campaigns
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.
June - Cavernoma Awareness Month
June - Cavernoma Awareness Month
Throughout June, awareness is being raised for cavernomas around the world through public lectures, lighting up of landmarks, social media campaigns and fundraising events. We encourage everyone to participate in international activities, to spread knowledge on social media, and help increase understanding of how cavernomas affect the lives of children, adults, and their families. Please use the hashtag #CavernomaAwarenessMonth!
Image from: Cavernous Malformation Canada
CAUK's Annual Conference
Saturday 21st June 2025
Recordings will become available here!
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