Jana Bergholtz 🕊🇺🇦

#EUPATI fellow | Patient Co-Researcher at GPCC/Gothenburg University | @EuropeCavernoma @cavernost
Done here,

[Jana Bergholtz 🕊🇺🇦 @janerle2002]

I'm done here, moving to bluesky:
https://t.co/Bo02JnrWX3

[European Cavernoma Alliance @EuropeCavernoma]

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!

[European Cavernoma Alliance @EuropeCavernoma]

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

[Jana Bergholtz 🕊🇺🇦 @janerle2002]

Congratulations Favour & team! We patients are deeply thankful for all your hard work! 🙏

[Favour Onyeogaziri @Faayvour]

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

[Maria J Santana @MariaJ_Santana]

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

[Jana Bergholtz 🕊🇺🇦 @janerle2002]

@funkratt_se @EupatiSverige @sallsynt @HjartLung @FokusPatient @MFDse @CancerNatverket @HhtSverige

[Jana Bergholtz 🕊🇺🇦 @janerle2002]

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

[Jana Bergholtz 🕊🇺🇦 @janerle2002]

Many thanks to Ida Björkman, Axel Wolf, Vanessa Crine, Helena Cleeve, and Maria-Jose Santana for partnering with me on this!

@TDJeanette #PatientEngagement #PatientInvolvement #PublicInvolvement #PatientEmpowerment #NothingAboutUsWithOutUs

[Jana Bergholtz 🕊🇺🇦 @janerle2002]

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

[Jana Bergholtz 🕊🇺🇦 @janerle2002]

💡 If you are working in #healthcare #qualityimprovement, #patientsafety, #community-based initiatives, #peersupport or #education of healthcare professionals, make sure to check out Table 2 in the article with signposts to conceptual guidance for PPI in these contexts!

[Funktionsrätt SE @funkratt_se]

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

[Cavernous Malformation Canada @cavernomacanada]

Niagara Falls lights up for #CavernousMalformationAwarenessMonth! Thank you @NiagaraParks #lightupforcavernousmalformation #cavernousmalformation #cavernoma #cavernomaawareness #stroke #neuroscience #angioma #niagarafalls

[Cavernous Malformation Canada @cavernomacanada]

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

[Cavernous Malformation Canada @cavernomacanada]

Thank you Byward Market for lighting up last night for #CavernousMalformationAwarenessMonth! #ottawa #cavernousmalformation #lightupforcavernousmalformation #cavernoma #angioma #stroke #neuroscience

[CN Tower / Tour CN @TourCNTower]

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

[CavernomaIreland @CavernomaIre]

🌍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

[European Cavernoma Alliance @EuropeCavernoma]

It's international #CavernomaAwarenessDay and we are releasing the results of our first European Cavernoma Patient Survey!

@cavernomauk @CavernomaIre @cavernost @eurordis #Cavernoma #CavernousMalformation

[Jana Bergholtz 🕊🇺🇦 @janerle2002]

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:

[WHO/Europe @WHO_Europe]

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

[EURORDIS-Rare Diseases Europe @eurordis]

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!