Sjeldne diagnoser @Sjeldne
Nasjonal kompetansetjeneste for sjeldne diagnoser | Sjeldentelefonen 800 41 710 bit.ly/3FBWFjc Norge Joined January 2015-
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Visste du at noen sjeldne diagnoser kan føre til demens allerede i barndommen? I en ny artikkel fra @aldringoghelse forklarer @nksds Ingrid Bergliot Helland hva barnedemens er. Les mer: aldringoghelse.no/nar-barn-far-d…
🌱JARDIN: Europeisk samarbeid for bedre tilbud ved sjeldne diagnoser. 27 EU-land, Norge & Ukraina. Mål: Forbedre diagnostikk, behandling & oppfølging. @jardin_EU_JA #sjeldendiagnoser #rarediseases #JARDIN #ERNs #helse eesc.europa.eu/en/news-media/…
Lanseringen av JARDIN-prosjektet 🌱🌸 markerer et nytt kapittel for sjeldne diagnoser i Europa. Med et budsjett på 18M euro, vil europeiske land i de tre neste årene samarbeide om systemer for et mer samordnet helsetilbud. @jardin_EU_JA #SjeldneDiagnoser #rarediseases…
Thank you to the organisers and participants for three fantastic days of great, productive collaboration. @helsesorost @Helsedir @Oslounivsykehus #sjeldnediagnoser #rarediseases
Thank you to the organisers and participants for three fantastic days of great, productive collaboration. @helsesorost @Helsedir @Oslounivsykehus #sjeldnediagnoser #rarediseases
#JARDIN KoM concludes after 3-days of hard work on how to integrate #ERNs into National Healthcare Systems 🇪🇺. Thanks to the coordinating team at @MedUni_Wien, #EU_MS + #Norway + #Ukraine partners, and the support of @EU_Health @EU_HaDEA @EU_EESC
Thanks to all internal and external stakeholders: @jardin_EU_JA partners, 🇪🇺 #MoH + #Norway and #Ukraine, @eurordis @Orphanet @EU_Health @EU_HaDEA @EU_EESC . We have a lot of expectations on #JARDIN and the future of the #ERNs
🇳🇴🤝🇪🇺 I EUs arbeid for et mer likeverdig helsetilbud til sjeldne diagnoser står Norge sterkt! Med 36 mill. berørte & 6000+ sykdommer, er samarbeid nøkkelen. Takket være prosjekter som JARDIN, tar vi del i viktige tiltak: ✅ Utvikler strategier som inkluderer samarbeid med…
«Ingen med sjeldne diagnoser skal bli etterlatt i det europeiske helsesamarbeidet»
«Ingen med sjeldne diagnoser skal bli etterlatt i det europeiske helsesamarbeidet»
🌱 Kick-off for JARDIN-prosjektet! En historisk reise starter for bedre integrering av sjeldne diagnoser i Europa. Støttet av EU med 18M euro, samler vi eksperter og helsepersonell for å forbedre tilgang til spesialisert omsorg. 🌍💚 Sjeldne diagnoser påvirker 30M i Europa. Vårt…
Selvfølgelig! Her er en Twitter-versjon a 🎉 Vi har feiret #NKSD10år med stil! Takk til alle som bidro med musikk, diskusjon og verdifull kunnskapsdeling. 📚💡 ✨ Høydepunkter: Ekspertinnsikt om sjeldne diagnoser 🧬 Fokus på kompetansebygging, kunnskapsspredning,…
NKSD bidrar aktivt i JARDIN, et viktig EU-initiativ med 18M€ fra EU4Health, for å styrke en mer samordnet tilnærming til sjeldne diagnoser #SjeldneDiagnoser #EU4Health @Oslounivsykehus @Helsedir @helsesorost @jardin_EU_JA …w-altomdinhelse-no.cdn.ampproject.org/c/s/www.altomd…
I anledning #Sjeldendagen løfter vi frem KIs rolle for #likeverd i behandling av #sjeldnediagnoser. Vår kronikk peker på veien fremover dagensmedisin.no/hvem-vil-forme… #Rarediseaseday
Få med deg den norske Sjeldendagen 29. februar ffo.no/aktuelt/arrang…
📅 Markér #Sjeldendagen 2024 på skuddårsdagen, 29. februar! En unik mulighet til å øke bevisstheten rundt sjeldne diagnoser. 🌍 NAPOS står klar på Haukeland sjukehus med info du ikke vil gå glipp av! helse-bergen.no/nasjonalt-komp…🖥️ Kan ikke delta på Haukeland? Bli med digitalt på vår…
Takk til @helsesorost og alle som bidro til en innsiktsfull fagdag om presisjonsmedisin, spesielt for sjeldne diagnoser ved @Oslounivsykehus. Highlights: ✨ @OlveMoldestad om nyfødtscreening og persontilpasset medisin fra fødsel. ✨ @SteinAreAksnes om betydningen av #ERN og…
Gratulerer til alle mottakerne av midler til forskning på sjeldne diagnoser for 2024👏👏👏
Gratulerer til alle mottakerne av midler til forskning på sjeldne diagnoser for 2024👏👏👏
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Beacon for Rare Disea.. @RareBeacon
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239 Followers 750 Following Photojournalist, RFK/POY award winner, Pulitzer finalist, ZUMA Press, NBC contract photog,former OC Register staff photographer and UCI director of visualsIt takes two to tango! 💃 Patient-clinician partnership in the ERNs can consist of a variety of things: setting goals, meeting to discuss concerns, evaluating progress and celebrating achievements! Are you involved in an ERN? 🙋 Find out more: go.eurordis.org/rWNgdL
Now‼️ 📢 Follow live the conference 'Current situation of rare diseases in Spain', organised by @FundacionAreces, @CIBERER and @FEDER_ONG . #RareDiseases #Spain #Conference Follow it through streaming👇
🔔Damos comienzo a la Jornada que, de la mano de la @FundacionAreces , @CIBERER y nuestra Federación, va a analizar la situación actual de las #enfermedadesraras. Si no has podido acompañarnos presencialmente, no dudes en hacerlo a través de su streaming👉bit.ly/3JuiS6l
20 years of action!✊ We have advocated for the ERNs for over two decades. Today, our efforts focus on securing a sustainable future for the ERNs. Read the open letter we co-signed in October last year with ERN Coordinators and patient representatives. 👉eurordis.org/support-for-er…
Join us in following @EU2024BE’s high-level conference on the future of Europe’s #HealthUnion. Ministers, policymakers and experts will be discussing the strategic priorities for the next @EU_Commission's health agenda. #EU4Health Livestream: belgian-presidency.consilium.europa.eu/en/events/high…
Today we celebrate National Transplant Day in Spain! Today we remember all the heroes who have given and received the most precious gift: the chance to live💚 Join us to raise awareness about the importance of organ donation and share hope for a future full of possibilities#DNT24
Lunit (@Lunit_AI) Announces Promising Results in Neoadjuvant Immunotherapy Study for Head and Neck Cancer Patients - check the link for more ow.ly/Xlow50R36TU #HeadAndNeckCancer #cancerResearch #MedicalResearch #ClinicalTrials #cancerTreatment #rarediseases #cancer
💻 Upcoming #ernRND joint webinar w/ @euro_nmd @EANeurology 📚 The spectrum of genetic synucleinopathies 📅 12 March, 3 – 4 pm CET 🗣️ Leonidas Stefanis, University of Athens Medical School, Athens, Greece Sign up 👉 t1p.de/8c5af
Last week, #ERKNet participated in the kick-off meeting for #JARDIN, a huge project aimed at integrating ERNs into national healthcare systems💡 Stay tuned for updates as we continue our efforts to enhance #healthcare accessibility across Europe!🌍 🔗linkedin.com/posts/erknet_j…
Great impressions at the European Joint Action JARDIN kick-off meeting which took place last week
#JARDIN KoM concludes after 3-days of hard work on how to integrate #ERNs into National Healthcare Systems 🇪🇺. Thanks to the coordinating team at @MedUni_Wien, #EU_MS + #Norway + #Ukraine partners, and the support of @EU_Health @EU_HaDEA @EU_EESC
Thanks to all internal and external stakeholders: @jardin_EU_JA partners, 🇪🇺 #MoH + #Norway and #Ukraine, @eurordis @Orphanet @EU_Health @EU_HaDEA @EU_EESC . We have a lot of expectations on #JARDIN and the future of the #ERNs
It’s a wrap! The Joint Action #JARDIN shaping the future of #ERNs Conference gathered lots of fresh perspectives and engaging connections. Thank you to all expert speakers and participants who made this day a success! #RareDiseases
📍New🇪🇺 joint action👉 €18 million funding! ➡️Key initiative to improve diagnosis, treatment and care for rare disease patients. 🇪🇺Reference Networks to be integrated in national health systems👉bringing crucial expertise closer to patients. #HealthUnion
Nasjonal kompetansetjeneste for sjeldne diagnoser: Disse har fått midler til forskning på sjeldne diagnoser #Sjeldnediagnoser #NKSD kommunikasjon.ntb.no/pressemelding/…
#Arendalsuka Er vi klar for endringene på sjeldenfeltet? Debatten er i gang Følg den her. vimeo.com/event/3534326 @helsesorost @Frambu @Sjeldendiagnose @TRS_Sunnaas @FFOtweet
Gleder meg til denne gangen å stille spørsmålene under Arendalsuka! Nå lader jeg opp til samtale om fremtidig tilbud til personer med sjeldne diagnoser i Hjerneteltet på onsdag. Kommer du?
📣 Bli med på vår engasjerende scenesamtale om sjeldne diagnoser under #Arendalsuka2023 den 15. august! Dykk ned i fremtidens utfordringer og muligheter i sjeldenfeltet. 🌟Fysisk: program.arendalsuka.no/event/user-vie… 🌟Strømmelenke: lnkd.in/dbVGky6u #SjeldneDiagnoser #NKSD
Her finner du opptak fra vårt kurs og fagdag om sjeldne bensykdommer med tidlige forandringer i ledd: sunnaas.no/fag-og-forskni…
Kurs om mukopolysakkaridosesykdom og liknende tilstander frambu.no/aktualiteter/k… via @Frambu
Translation, reliability, and validity of the Norwegian version of the ABILHAND-NMD and the ACTIVLIM for Myotonic Dystrophy type 1 @HanneLudtFossmo @UniOslo_MED @Oslounivsykehus @UniOslo_HELED @Sjeldne @eurodis @Sjeldendiagnose @ResearchNeurOUS tandfonline.com/doi/full/10.10…
Norge får nærmere fem millioner kroner til å samarbeide med europeiske spesialister om sjeldne diagnoser bit.ly/3NIUBv6
Exciting times ahead for ERNs and for national health care services!
"Stor nyhet! 🎉 Nasjonal kompetansetjeneste for sjeldne diagnoser er del av #JARDINprosjektet, mottar 5M kr fra EU for samarbeid om sjeldne diagnoser. Dette styrker norske og europeiske nettverk, og gir pasienter tilgang til likeverdig behandling🤝 helsedirektoratet.no/nyheter/far-fe…
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