Cavernöst Angiom Sverige (CASE)

It's #RareDiseaseDay! 👋🎨 We are advocating for symptomatic sporadic #cavernoma to become classified as rare disease in #Orphanet, which would allow researchers to apply for rare disease funding. Atm, only familiar cavernoma are classified as rare. ➡️ Share our video to help!

💜🌍 Today is Rare Disease Day! 🌍💜 Together, we stand with the 300 million people worldwide living with rare diseases. In uniting on this day we can raise awareness, advocate for change, and promote a more equitable future! ⚖️ Learn more: rarediseaseday.org

Today, we are celebrating #WomeninScience! 👩‍🔬👩‍💻👩‍💼 Thank you so much for all your hard work in understanding cerebral cavernous malformations (CCM) and helping to find a cure for us patients! #cavernoma #kavernom #CavernousMalformation #CavernousAngioma

Wishing you Happy Holidays and a Happy New Year 2025! #holidayseason

Underbart att se forskning om kavernom från Peetra Magnussons forskargrupp (Uppsala universitet) publicerat i Nature tidskriften: nature.com/articles/s4416… #cavernoma #kavernom #cavernousMalformation

🌍TODAY is International Cavernous Awareness Day The Cavernoma community around the World. Raising awareness of cavernoma (cavernous angioma, cavernous malformation) of the brain and spinal cord. Advocating for Research to find a Cure – Because Brains & Spines Shouldn’t bleed

A beacon of hope and awareness lit up Calgary on June 12! Thank you Calgary Tower! #lightupforcavernousmalformation #cavernousmalformation #angioma #stroke #yyc #cavernoma #neuroscience

It's international #CavernomaAwarenessDay and we are releasing the results of our first European Cavernoma Patient Survey! @cavernomauk @CavernomaIre @cavernost @eurordis #Cavernoma #CavernousMalformation

📣 June is #CavernomaAwarenessMonth! 📣 Throughout June, the international #CavernomaCommunity has several events scheduled and news to share as we #HopeForACure! #Cavernoma #StopCavernomas #CavernousMalformation #Kavernom #CavernousAngioma #CaverNoMore20230

Nu drar #patientriksdagen24 igång och vi är på plats, även om vi inte är så många i vår @sallsynt förening. #hälsodata #EHDS @annieloof @jakobforssmed

Det är #Sällsyntadagen idag och vi @EuropeCavernoma lansera vår första europeiska patientundersökning för kavernom idag! Fyll i enkäten här: bit.ly/EuropeanCavern… Mer information: cavernoma-europe.org #RareDiseaseDay #Kavernom

#gottnyttår #HappyNewYear

@MariaGlobisch 💪👏 yeah, so exciting!!!

Some more pics from #CVB2023 - with a huge THANK YOU to Peetra Magnusson & organizers @VascBioUpp for letting us represent and share the CCM patient perspective(s)! Wishing everyone a great midsommar 🍓🥂💐 and safe travels back home! ✈️🚄 #cavernoma #stroke #epilepsy

Don't miss @cavernomauk's Annual International Forum, if you want to learn more about #cavernoma! Register here: us06web.zoom.us/webinar/regist… Note that these are UK times, Central Europe is 1h later 👇

We wanted to thank everyone who came and talked to us after Mia's story was shown yesterday! 💚🙏 Thank you also for all your research efforts trying to understand CCM disease in order to pave the way for better treatment options than neurosurgery! #CVB2023

Thanks to the organizers @VascBioUpp for inviting us as guests to #CVB2023 to present the CCM patient perspective. We are here today and Monday afternoon. Feel free to come talk to us and ask us anything! #cavernoma

We welcome Sweden's commitment to prioritising rare diseases and developing a National Strategy on Rare Diseases this year. It's vital that we also see more European-level action on rare diseases to ensure that no one is left behind. #NRDS2023

Vistelsen erbjuder unika möjligheter för familjer att få kunskap, träffa andra i liknande situation och utbyta erfarenheter! Mer information och anmälan: agrenska.se/vi-erbjuder/ka… #Sällsyntaliv #RareDiseaseDay

Ågrenska erbjuder en familjevistelse för familjer som har barn och ungdomar med #kavernom (28 aug - 1 sept 2023)! Ågrenska är ett nationellt kompetenscentrum för sällsynta diagnoser på Lilla Amundön utanför Göteborg. #kavernom #kavernöstangiom #stroke #hjärnblödning #epilepsi