Sign in with Twitter

Username:

Patient Expert & Advocate. EUPATI Fellow, med R&D. Like Biobanking. #LITmeds fan. Linking pin. #share. #PatientParticipation

162 Following   495 Followers   3,690 Tweets

Joined Twitter 7/3/14


BBMRI-ERIC is hiring! We are looking for an #ELSI Services Officer based in #Austria to support our ELSI team on et… https://t.co/9FDHh7eTbq
Retweeted by Marleen aka SparklesOk liver world, here’s another opportunity to excel. @ERN_RARE_LIVER @EASLnews @NASPGHAN @my_ueg https://t.co/pH54KNnC42And the greatest advance of the 21st century will be smart data for faster and more accurate information about real… https://t.co/E0pfXq9Nnz
Retweeted by Marleen aka SparklesWithout the data we are just another opinion. Excellent presentation by Sharon Winton, Lymphoma Aus, at PharmAus 19… https://t.co/4lkisLxDYJ
Retweeted by Marleen aka Sparkles
10/16
2019
De uitzending van 'Dokters van Morgen' van vanavond staat volledig in het teken van spieren. De uitzending begint o… https://t.co/8E5gmQ3Atj
Retweeted by Marleen aka SparklesHere you go @thetimes I’ve corrected headline for you. “All pupils are missing out on education because schools ar… https://t.co/9rqvfjaDqx
Retweeted by Marleen aka SparklesTODAY! @bbmri_de is holding a webinar "Data Quality and Provenance" Oct 15 3:30-4:30 PM CET. @ChariteBerlinhttps://t.co/P7WzCwafcY
Retweeted by Marleen aka Sparkles
10/15
2019
The EUPATI Patient Expert Course is recruiting again. Please click here to apply for the Patients Academy!… https://t.co/4ljaf8y75h
Retweeted by Marleen aka SparklesZie mensen na een orgaan donatie opleven, weer naar school gaan, werk weer oppakken, kinderen krijgen. Ouders die h… https://t.co/kD6o4sYej314 days left to apply to the EUPATI Patient Expert #Course! Apply here ASAP https://t.co/SB9hJgCIGL and check… https://t.co/vJQu5ktCQ1
Retweeted by Marleen aka SparklesZeg @IBMBenelux ,@ibmdesign @IBMWatsonMedia @IBM , kennen jullie het IBM mini Museum al? Met Facebook pagina! In… https://t.co/OXXOgJGNAm
10/14
2019
Wat een goede uitzending van @kassa_bnnvara vanavond over problemen rondom hulpmiddelen voor mensen met n beperking… https://t.co/T4B6oOmUqc
Retweeted by Marleen aka SparklesWerk aan de winkel @MinVWS , @VNGemeenten en leveranciers. Praat met ervaringsdeskundigen ipv rapport maken over si… https://t.co/4xb5Xhj0PpWat gaat er toch mis in de #hulpmiddelenzorg? Al vier jaar lang volgt #KassaTV mensen met #hulpmiddelen die te make… https://t.co/ZAWqr3apyB
Retweeted by Marleen aka SparklesEen hulpmiddel is geen luxe naar noodzaak. Daarom ondersteunen wij de actie van @kassa_bnnvara #regelhethttps://t.co/H4uDEerXlC
Retweeted by Marleen aka Sparkles#RegelHet: er zou een volgsysteem moeten komen zodat ouders kunnen zien waar het stroopt!
Retweeted by Marleen aka SparklesMy @eupatients peers, Who’s from Bulgaria? https://t.co/RqJ69WQO6K
10/12
2019
@mtmayrhofer @PBijnen 🤣🤣World Mental Health Day - Love everyone. Care about everyone. Everyone has something to contribute to this world if… https://t.co/ZUm6UacIJx
Retweeted by Marleen aka SparklesInteresting Ethics Cafe discussion at #EBW19 : "What are those incidental findings that should be returned to parti… https://t.co/7NXabckxBb
Retweeted by Marleen aka SparklesImportant topic! @eurordis @EFGCP @eupatients https://t.co/uKuDWNdBG3Let‘s continue NOW, right after our #EBW2019 #EthicsCafé session - share your examples and experiences of benefit s… https://t.co/ek9nFeQHpG
Retweeted by Marleen aka Sparkles👍🏼 @eupatients https://t.co/sB7wY5IQOBIt’s rare to find patients and advocates so experienced as Sophia @useMYdata !#EBW19 https://t.co/kO2SYKygy0
Retweeted by Marleen aka SparklesWay to go ladies! #EBW2019 I trust you will let @BBMRIERIC Patient Stakeholder Forum know if we can assist in any… https://t.co/yFWr064fAx🎼Music to my ears https://t.co/bkqTnLqYaDThank you Team for all you do. @eurordis @yann_eurordis @VSOPzeldzaam @rarediseasesint https://t.co/rJPifcs8ZrKarine Sargsyan, Managing Director of Biobank Graz talks about the ever-growing need for biobank education and prof… https://t.co/eDr2DOB5Sn
Retweeted by Marleen aka Sparkles @marywangCM @gulcingumus1 Thank you ladies! This means so much to me See you at #EBW20Our patients know how to share the knowledge they gather. @eupatibe 2019 event will include also a #biobanking sess… https://t.co/WVFFwi9wDa
Retweeted by Marleen aka Sparkles @joostphdrenth @UEGJournal @my_ueg @JAG_Endoscopy Colonoscopy is at the ‘Top 10 daunted list’ for patients 😉 No art… https://t.co/Nqosfuv5WlLaunched at #ebw19: So proud about our new and shiny Sample Locator facilitating central access to samples of the G… https://t.co/JO4Vzxe8YR
Retweeted by Marleen aka SparklesI keep telling everybody: #biobankers are the coolest people to hang out with. A few other examples * Ice Cream at… https://t.co/AIhBjn60gl
10/11
2019
Looking for a press release for the world's largest biobanking conference, going on now in Lübeck, Germany? Look no… https://t.co/WvW8tqtau2
Retweeted by Marleen aka Sparkles.@BBMRIERIC brings people together! First meeting EVER with the members of our Stakeholder Forum with national node… https://t.co/2WcL2Q8jxU
Retweeted by Marleen aka SparklesWowww, that sounds fabulous! #ERNs #EBW2019 @EASLnews @EASLedu @my_ueg @ZonMw @MinVWS @IMI_JU @eurordis https://t.co/fpjDcMuPBURead about the #ebw19 launch of our Sample Locator, new online search facilitating central access to biosamples of… https://t.co/hd4pZYM6ui
Retweeted by Marleen aka SparklesNew figures by @eurotransplant on waitinglist and transplantions at the Annual meeting! https://t.co/TxfJXgxzbF
Retweeted by Marleen aka SparklesHow do you create a healthy strategy for your biobank? Sirpa Soini @s_soini from @THLBiopankki, a member of… https://t.co/KNSAIr40fc
Retweeted by Marleen aka SparklesDat in de Week vd Toegankelijkheid je rolstoel wordt afgeleverd 🎉🎊👍🏼#GoedeTiming @toegankelijk https://t.co/9uHgOyUnp1Dus bijv. een taal op huidige VWO niveau, terwijl wiskunde op Mavo niveau blijft ➡️kind kan talent verder uitwerken… https://t.co/N16EK482qzGeacht @MinOCW Voorstel 1: Neem in ieder geval de volgende onderwerpen mee * orgaan donatie * biobanken * zeldzame… https://t.co/8NSQ2fNSll#Biobanks need to think hard about mission,vision & business plan.@eriksteinfelder shares his experience from… https://t.co/h2ayhe0TWl
Retweeted by Marleen aka SparklesGevonden in de tas van een op een rommelmarkt gekochte Polaroid camera. De tekst zegt Meike 19-4-93. Ben jij of ken… https://t.co/znbb1Y4rU2
Retweeted by Marleen aka Sparkles#PatiwntParticipation: How and not IF. There you go. Patient participation is the norm, has been for a while. You d… https://t.co/TmuCksruLh
10/10
2019
A good Patient Advocate will not act as solist. He/she has a huge international, cross-disease network of “colleagu… https://t.co/rilXHqFbWvMark Divers, from the Karolinska Institutet Biobank is the first speaker to start the discussion on… https://t.co/D9G4qHyp7N
Retweeted by Marleen aka Sparkles @RickBrink_mvgz Je gaat lekker hè ?! 😉 @bscheerder @BBMRIERIC @EFPIA @ESBBnews @patientexpert #Raredisease biobanks are here and ready to support research… https://t.co/HQ7q10Dhin
Retweeted by Marleen aka SparklesPatient organizations can play a crucial role in collaborative projects. We wish to see projects involving patients… https://t.co/OVdxNppue8
Retweeted by Marleen aka SparklesMust see https://t.co/SwvdWFVo31 @eurordis @robhejdenberg @3MonkeysZeno @rarecare @AKUSociety @RichMillington @tomlillywhite @ProgressFilmCo @Dottor_T 👏🏻👏🏻👏🏻👏🏻👏🏻 @francescoflo @BBMRIERIC @Viri_Beltran_V @eriksteinfelder @LucDeltombe @spyroszorbas @caiahern @mtmayrhoferhttps://t.co/nhLOXHdIKCSamples at the tip of your fingers, that sounds great. Dream? No, REALITY! 👇🏽 https://t.co/1MaOYEjcDYThere you go, you hit it on the nail. Sharing is caring, not only tissue, blood, 💩 etc., but also once there is a s… https://t.co/mWLkMuAZXUPiers Mahon in #EBW19 session on academic-industrial partnerships: "Samples are not valuable without treatment hist… https://t.co/VAdLmP7dmT
Retweeted by Marleen aka SparklesPacked room in the industry - academia partnership session of #EBW19. Gyorgy Margo Varga shares the experience of… https://t.co/EFyqZsbFJi
Retweeted by Marleen aka SparklesPatient’s voice getting ample of opportunity at #EBW19: preparation, posters, travel grants, speaker opportunities,… https://t.co/tCI1cEcZVd @BBMRIERIC @eriksteinfelder @OUBLIES2 @BiobankSverige @BbmriBe @francescoflo @ESBBnews @RositaKammler @habermann_k Looking good Eric!☺️ Thank you Francesco. When body and/or mechanics keeps a Patient Advocate from attending her fav conference, “be… https://t.co/xQORFRefiX @LucDeltombe @eriksteinfelder @OUBLIES2 @BbmriBe @bbmri_de @BBMRI_it @BBMRI_pl @swissbiobanking @BiobankSverigehttps://t.co/uELKaKxFCaThe #PatientPerspective might hold the key to your research question, who knows... https://t.co/n3L0LaD5JL @francescoflo So glad with the #EUPATI training, enabling patients and other stakeholders to collaborate on so many… https://t.co/kl9KtUIxHvThat’s the spirit! 👍🏼👏🏻👏🏻 https://t.co/6y9xEsE2dSOk #EBW19 attendees, Don’t miss the boat and take full advantage of this debate. You will have ample of arguments f… https://t.co/Z2Tk5X5X3EAnd it started! #EBW19 is LIVE from #Lubeck Welcome to our 700+ guests & particularly to the 250+ first time regsit… https://t.co/Canz9wsBrX
Retweeted by Marleen aka Sparkles @BBMRINL Excellent. Have an inspiring #EBW19Now on stage at #EBW19 @eriksteinfelder & @habermann_k are welcoming the 700+ participants. They are reminding them… https://t.co/jJJvR04byP
Retweeted by Marleen aka SparklesIn just a few minutes, #EBW19 will officially begin! Our theme: "Biobanking for a healthier world". There will be d… https://t.co/k7MKaFmthR
Retweeted by Marleen aka SparklesSounds very interesting. @eupatients @ChEupati https://t.co/cCYGNQ8SYU
10/9
2019
@NadineVolk_GER 🧘🏻‍♀️Congrats #HorizonEU #Cancer Mission Board members with one of the best Patient Advocates , @BettinaRyll , willing t… https://t.co/5KVGXD47BFLook, bed time reading 📖 https://t.co/324eYe6XxI @clareborn New concept: all fresh, non from the freezer 🤣 #EBW19Proud of all attendees making the effort to travel & learn for their support groups as well as #RareDiseases. Speci… https://t.co/9geiSmSa2AGefeliciteerd NTS @donorinfo met jullie vernieuwde website! Check it out: https://t.co/fDFEVAdvC2 @VSOPzeldzaamhttps://t.co/WJRoB1tC2SDear @eupatients Don't forget to follow #EBW19 on Twitter for updates, insights and the hottest news on… https://t.co/qoBIecwONTZeg #EUPATI studenten vd NLse opleiding: #Biobanken worden ook behandeld tijdens de opleiding. Je kunt nu al HET ev… https://t.co/1t8rOYNZVI @filfoie Dissemination via 1. Orphanet 2. ERNs @BBMRIERIC @heimomueller @ESBBnews Is putting the freezers from -80C to e.g. -70C an option to be eco-friendly?And yes, another @BBMRIERIC Patient Stakeholder Forum member tweeting regarding his #EBW19 experience. Don’ forget… https://t.co/5XEO8hbbz1Communication has more impact if there’s a person behind it. But organizations need to be honest regarding who’s ac… https://t.co/AaRLU4g04d
Retweeted by Marleen aka SparklesWelcome in Lübeck for an inspiring week about #biobanking. Want to share tweets as well? Please use #EBW19 https://t.co/KS0KZPwJQF
Retweeted by Marleen aka SparklesGood to see many tweets already from the @BBMRIERIC Patient Stakeholder Forum Members, like Mrs Aertsen 👍🏻 https://t.co/ebbyNMU2X9I challenge you to get this message across every continent at least 5 times. Here we go: One from Europe Which cont… https://t.co/1e6U99bS32Ok #EBW19, I think you have a challenge at your hands... just sayin.... https://t.co/C0Gr6bHtYVThe @BBMRIERIC Patient Stakeholder Forum is taking notes. Thank you for this biotiful idea 🌷🌸🌻🌼🌺 https://t.co/2iKy8B5ld5
10/8
2019
Ok #EBW19 attendees: eat your heart out! And, if your tool/project etc is in dire need of the all important patien… https://t.co/woxECi8QKU @knarreprak Prachtig resultaat, Gefeliciteerd. En how kan Ik op de hoogte gehouden worden van dit mooie initiatief? @alzheimernl Oplossing: Camera die direct foto’s print + boek je/schrijft ➡️ iedereen die langskomt/iets onder neem… https://t.co/IvwqB1dUw5 @marywangCM @francescoflo @EJPRareDiseases @TNGBnetwork @NancyScience @mtmayrhofer @EvaBS14 @ConnectRD @BBMRIERIC Keep those photos coming 🤣 @PGOsupport Ahhh, dank voor verduidelijking. 😉 @clareborn @francescoflo @eriksteinfelder @BBMRIERIC Agree. Next year?What is patient engagement and what is its value? Who should be doing patient engagement activities? What is meanin… https://t.co/vFEiuFe5o0
Retweeted by Marleen aka SparklesExcellent. Enjoy Mary! https://t.co/PNUKxiGdITGeachte bestuurders @bloemendaaltwit @Heemstede & @gemeentehaarlem, Hebben jullie al een toiletbele… https://t.co/lw3HJUkRX8Dare to share! Samples aren’t made to be used for one CT or only your own research. Sharing = caring. Fab options a… https://t.co/4w2X0Ahv5tHoera! Goed@moment om te vragen: @gemeentehaarlem kunnen er meer (vaste) plaatsen voor driewielers komen in fietse… https://t.co/P7nymmScsn @AndreaWutte @francescoflo @BBMRIERIC @ESBBnews Have a fabulous week and all the best with your presentarion. You will nail it, I’m sure.Morgen geht's los: In Lübeck startet die Europe #Biobank Week #EBW19 mit Workshops; ab Mittwoch Vortragsprogramm ru… https://t.co/ekvM4fAcx2
Retweeted by Marleen aka Sparkles
10/7
2019

0