Non-profit #PatientOrganisation for #CavernousAngioma, also known as #CavernousMalformation, #CCM and #Cavernoma. Sweden.
Stockholm, Sweden
Joined February 2019
- Tweets204
- Following299
- Followers101
- Likes172
Cavernöst Angiom Sverige (CASE) retweeted
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!
Cavernöst Angiom Sverige (CASE) retweeted
💜🌍 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/
Cavernöst Angiom Sverige (CASE) retweeted
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
Cavernöst Angiom Sverige (CASE) retweeted
Wishing you Happy Holidays and a Happy New Year 2025!
#holidayseason
Cavernöst Angiom Sverige (CASE) retweeted
🌍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
Cavernöst Angiom Sverige (CASE) retweeted
A beacon of hope and awareness lit up Calgary on June 12! Thank you Calgary Tower! #lightupforcavernousmalformation #cavernousmalformation #angioma #stroke #yyc #cavernoma #neuroscience
Cavernöst Angiom Sverige (CASE) retweeted
It's international #CavernomaAwarenessDay and we are releasing the results of our first European Cavernoma Patient Survey!
@cavernomauk @CavernomaIre @cavernost @eurordis #Cavernoma #CavernousMalformation
Cavernöst Angiom Sverige (CASE) retweeted
📣 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
Cavernöst Angiom Sverige (CASE) retweeted
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
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.
Cavernöst Angiom Sverige (CASE) retweeted
Congratulations to Dr. Luisa-Maria Botella Cubells who is receiving one of the #BlackPearlAwards tonight! We are so thankful for all you have done for us, Luisa-Maria! #cavernoma #StopCavernomas #RareDiseases #RareDiseaseDay #CareforRare @eurordis
👇👇eurordis.org/scientific-awar…
Cavernöst Angiom Sverige (CASE) retweeted
Check out this documentary #eloquent @AllianceToCure about #ccm #cavmal #cavernoma #CavernousMalformation @cavernost @angiomas @TheCavernomaSoc @cavernomauk @ACavernoma @EuropeCavernoma
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Cavernöst Angiom Sverige (CASE) retweeted
New research results on blood clot formation in #Cavernoma from Uppsala university: uu.se/en/press/press-release…
@MariaGlobisch @VascBioUpp
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Cavernöst Angiom Sverige (CASE) retweeted
Ska du också till Almedalen, kom förbi vårt tält och säg hej! Du hittar oss på Cramérgatan plats nr 330. Vi är där hela Almedalsveckan 3–7 juli, mellan klockan 10–17.
#Almedalsveckan #SällsyntaHälsotillstånd #SällsyntaDiagnoser #SällsyntaLiv
Cavernöst Angiom Sverige (CASE) retweeted
Hur ser det ut i din sjukvårdsregion?
Riksförbundet Sällsynta diagnoser har jämfört resultaten mellan de sex sjukvårdsregionerna i vår medlemsundersökning och sammanställt dessa i regionala rapporter.
De regionala rapporterna finns att ladda ner som PDF via vår hemsida.
Cavernöst Angiom Sverige (CASE) retweeted
Yep, we are at #Quality2022. 🦋🥳
Looking forward to our first @QualityForum 🤩
#patientinvolvement #patientengagement
Cavernöst Angiom Sverige (CASE) retweeted
📢 June - International Cavernoma Awareness Month
🌍 Around the World the Cavernoma community are - Raising Awareness of Cavernoma (Cavernous Malformation, Cavernous Angioma).
#WeAreMany #WeAreRare #WeAreProud #WeAreStrong
Cavernöst Angiom Sverige (CASE) retweeted
June is international awareness month for Cavernoma / Cavernous Malformation / Cavernous Angioma! Time to spread awareness around the world!
#Cavernoma #CCM #FCCM #CavernousMalformation #CCM1 #CCM2 #CCM3 #CavernousAngioma #Kavernom #StopCavernomas #CaverNoMore2030 #CureCCM
Cavernöst Angiom Sverige (CASE) retweeted
Tack till våra medlemmar som svarat på vår senaste medlemsundersökning! Nu finns rapporten ”Sällsynt men inte ovanlig 2022” att läsa här: sallsyntadiagnoser.se/sallsy…
#Sällsyntadagen #Sällsyntadagen2022 #SällsyntaLiv #SällsyntMenInteOvanlig #RareDiseaseDay #RareDiseaseDay2022
Cavernöst Angiom Sverige (CASE) retweeted
CAUK provide practical & informational support for people of all ages affected by #cavernoma & their families.
We offer adult & family support groups, therapy, community meet ups, professional webinars, support at school/work,benefits support & much more!
@cavernomauk
Cavernöst Angiom Sverige (CASE) retweeted
It's #RareDiseaseDay today! A good day to learn about #cavernoma.
Cavernoma are raspberry-shaped blood vessel malformations that occur in the brain and spinal cord.
The familial forms (CCM1, CCM2, CCM3) occur only in 1-5 of 10,000 people: orpha.net/consor/cgi-bin/OC_…
#vascular