Cavernöst Angiom Sverige (CASE) (@cavernost) header
Cavernöst Angiom Sverige (CASE) (@cavernost) profile picture

Cavernöst Angiom Sverige (CASE)

@cavernost

Non-profit #PatientOrganisation for #CavernousAngioma, also known as #CavernousMalformation, #CCM and #Cavernoma. Sweden.

 Stockholm, Sweden
cavernostangiomsverige.org
Joined February 2019
  • Tweets204
  • Following299
  • Followers101
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Photo by Cavernöst Angiom Sverige (CASE) (@cavernost)Photo by Cavernöst Angiom Sverige (CASE) (@cavernost)Photo by Cavernöst Angiom Sverige (CASE) (@cavernost)Photo by Cavernöst Angiom Sverige (CASE) (@cavernost)Photo by Cavernöst Angiom Sverige (CASE) (@cavernost)Photo by Cavernöst Angiom Sverige (CASE) (@cavernost)Photo by Cavernöst Angiom Sverige (CASE) (@cavernost)Photo by Cavernöst Angiom Sverige (CASE) (@cavernost)Photo by Cavernöst Angiom Sverige (CASE) (@cavernost)Photo by Cavernöst Angiom Sverige (CASE) (@cavernost)
Cavernöst Angiom Sverige (CASE) retweeted
European Cavernoma Alliance (@EuropeCavernoma) profile picture
European Cavernoma Alliance@EuropeCavernoma28 Feb 2025
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!
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Cavernöst Angiom Sverige (CASE) retweeted
Rare Disease Day (@rarediseaseday) profile picture
Rare Disease Day@rarediseaseday27 Feb 2025
💜🌍 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/
Image from Rare Disease Day (@rarediseaseday)
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Cavernöst Angiom Sverige (CASE) retweeted
European Cavernoma Alliance (@EuropeCavernoma) profile picture
European Cavernoma Alliance@EuropeCavernoma11 Feb 2025
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
Image from European Cavernoma Alliance (@EuropeCavernoma)
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Cavernöst Angiom Sverige (CASE) retweeted
European Cavernoma Alliance (@EuropeCavernoma) profile picture
European Cavernoma Alliance@EuropeCavernoma24 Dec 2024
Wishing you Happy Holidays and a Happy New Year 2025! #holidayseason
Image from European Cavernoma Alliance (@EuropeCavernoma)
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Underbart att se forskning om kavernom från Peetra Magnussons forskargrupp (Uppsala universitet) publicerat i Nature tidskriften: nature.com/articles/s44161-0… #cavernoma #kavernom #cavernousMalformation
Pharmacological blocking of neutrophil extracellular traps attenuates immunothrombosis and neuroi...

Pharmacological blocking of neutrophil extracellular traps attenuates immunothrombosis and neuroi...

Nature Cardiovascular Research - Onyeogaziri et al. show that the formation of neutrophil extracellular traps contributes to a chronic wound state in cerebral cavernous malformation, while...

nature.com
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Cavernöst Angiom Sverige (CASE) retweeted
CavernomaIreland (@CavernomaIre) profile picture
CavernomaIreland@CavernomaIre14 Jun 2024
🌍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
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Cavernöst Angiom Sverige (CASE) retweeted
Cavernous Malformation Canada (@cavernomacanada) profile picture
Cavernous Malformation Canada@cavernomacanada14 Jun 2024
A beacon of hope and awareness lit up Calgary on June 12! Thank you Calgary Tower! #lightupforcavernousmalformation #cavernousmalformation #angioma #stroke #yyc #cavernoma #neuroscience
Image from Cavernous Malformation Canada (@cavernomacanada)
Image from Cavernous Malformation Canada (@cavernomacanada)
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Cavernöst Angiom Sverige (CASE) retweeted
European Cavernoma Alliance (@EuropeCavernoma) profile picture
European Cavernoma Alliance@EuropeCavernoma14 Jun 2024
It's international #CavernomaAwarenessDay and we are releasing the results of our first European Cavernoma Patient Survey! @cavernomauk @CavernomaIre @cavernost @eurordis #Cavernoma #CavernousMalformation
Image from European Cavernoma Alliance (@EuropeCavernoma)
Image from European Cavernoma Alliance (@EuropeCavernoma)
Image from European Cavernoma Alliance (@EuropeCavernoma)
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Cavernöst Angiom Sverige (CASE) retweeted
European Cavernoma Alliance (@EuropeCavernoma) profile picture
European Cavernoma Alliance@EuropeCavernoma1 Jun 2024
📣 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
Image from European Cavernoma Alliance (@EuropeCavernoma)
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Nu drar #patientriksdagen24 igång och vi är på plats, även om vi inte är så många i vår @sallsynt förening. #hälsodata #EHDS @annieloof @jakobforssmed
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
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Det är #Sällsyntadagen idag och vi @EuropeCavernoma lansera vår första europeiska patientundersökning för kavernom idag! Fyll i enkäten här: bit.ly/EuropeanCavernomaPati… Mer information: cavernoma-europe.org #RareDiseaseDay #Kavernom
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
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#gottnyttår #HappyNewYear
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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
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
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Don't miss @cavernomauk's Annual International Forum, if you want to learn more about #cavernoma! Register here: us06web.zoom.us/webinar/regi… Note that these are UK times, Central Europe is 1h later 👇
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
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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
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
Cavernöst Angiom Sverige (CASE) (@cavernost) profile pictureCavernöst Angiom Sverige (CASE)@cavernost18 Jun 2023
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
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
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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
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
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Cavernöst Angiom Sverige (CASE) retweeted
EURORDIS-Rare Diseases Europe (@eurordis) profile picture
EURORDIS-Rare Diseases Europe@eurordis17 Apr 2023
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
Quote from Swedish Minister for Health Care, Acko Ankarberg, speaking at the Nordic Rare Disease Summit 2023. "People living with rare diseases are a priority for Sweden. In 2023 Sweden will start developing a National Strategy for Rare Diseases. We need more European actions at the European level on rare diseases." Presented on a pink green and blue EURORDIS quote card.

ALT Quote from Swedish Minister for Health Care, Acko Ankarberg, speaking at the Nordic Rare Disease Summit 2023. "People living with rare diseases are a priority for Sweden. In 2023 Sweden will start developing a National Strategy for Rare Diseases. We need more European actions at the European level on rare diseases." Presented on a pink green and blue EURORDIS quote card.

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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
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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/kale… #Sällsyntaliv #RareDiseaseDay
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28 februari är #Sällsyntadagen! Här finns mer information om alla aktivitäter som äger rum i Sverige vid Riksförbundet @sallsynt: cavernostangiomsverige.org/n… #RareDiseaseDay #rarediseaseday2023 #ShareYourColours #LightUpForRare #sällsyntaliv
Image from Cavernöst Angiom Sverige (CASE) (@cavernost)
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