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!
I'm pleased to announce that our #NCVR publication has now been released. @MagnussonLab we present the roles of #NETs in the progression of cerebral cavernous malformations (CCM)
Read at: https://t.co/L7187l1mKE
#NETosis#CureCCM#TreatCCM#rarediseases
Delighted to see our work ranking #1 of the Top ten most read BMJ articles in October - https://t.co/TeWKbXjUAM
Patient and public involvement in healthcare: a systematic mapping review of systematic reviews @AbSPORU@janerle2002@TDJeanette
Vill du vara med och utforma en nationell online-plattform för allmänhetens medverkan i hälsoforskning och innovation?
Mer information:
https://t.co/n53E4REEWG
#patientmedverkan#NothingAboutUsWithoutUs
As patient co-researcher, I’m happy to report that our
▶️ Systematic mapping review on patient and public involvement in healthcare
is now published @BMJ_Open 🎉
https://t.co/W2tAv2s3rN
@symptomsonthego@MariaJ_Santana @CleeveHelena
Det fanns en stor förväntan på #patientlagen när den kom för snart tio år sedan, men missnöjet är idag stort. Lagen används inte som det var tänkt. Idag lyfter vi frågan i #Almedalen! https://t.co/g8x36dlwkm @TDJeanette
Tonight the #CNTower will be lit burgundy, grey and white for International Cavernous Malformation Month / Ce soir, la #TourCN sera illuminée en bourgogne, gris et blanc pour le Mois international de la malformation caverneuse
🌍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
Alma Ata, 1978, Paragraph IV:
“The people have the right and duty to participate individually and collectively in the planning and implementation of their health care.”
Use this opportunity to do so:
What do you want heads of state to commit to at the UN High Level meeting on prevention and control of #NCDs in September 2025?
Join our consultation! We want to hear from people with lived experience, from member states, organisations and civil society.
https://t.co/W6dLJSFlpr
It's #EuropeanPatientRightsDay!
Despite it being a fundamental right, equitable healthcare and support is still an ongoing fight for too many people living with a rare disease.
👉 Learn more about our eight key asks to future European policymakersIt's #EuropeanPatientRightsDay!
Despite it being a fundamental right, equitable healthcare and support is still an ongoing fight for too many people living with a rare disease.
👉 Learn more about our eight key asks to future European policymakersIt's #EuropeanPatientRightsDay!
Despite it being a fundamental right, equitable healthcare and support is still an ongoing fight for too many people living with a rare disease.
👉 Learn more about our eight key asks to future European policymakersIt's #EuropeanPatientRightsDay!
Despite it being a fundamental right, equitable healthcare and support is still an ongoing fight for too many people living with a rare disease.
👉 Learn more about our eight key asks to future European policymakersIt's #EuropeanPatientRightsDay!
Despite it being a fundamental right, equitable healthcare and support is still an ongoing fight for too many people living with a rare disease.
👉 Learn more about our eight key asks to future European policymakers!