Top Tweets for #INPDR
Global partnership in action 🌍💙 Thanks to @INPDA and John Lee Taggart for capturing moments at our Family Support & Medical Conference. #NNPDF #NiemannPickDisease #Collaboration #INPDA #INPDR #PatientAdvocacy #Caregiver #PatientCommunity https://t.co/87SxTDxDRd
Thanks to our partner @NiemannPickUK for having us at the Annual Family Conference & Interactive Workshop! We were honored to join families, advocates, scientists & clinical professionals working to progress care, research & therapies for Niemann-Pick diseases. #NPC #NPUK #INPDR
Learn more and sign up to the @inpdr_registry using the link below – and if you are already registered, log in to see the updates and new features available now:
https://t.co/NsSUY3XxaA
#raredisease #niemannpick #npd #npc #asmd #inpdr
@inpdr_registry Clinical Research Manager @Jackieimrie58 is at the @SSIEM2023 in Jerusalem, Israel - if you're there, come along and see her! #SSIEM #INPDR
Let's help our friends at @NiemannPickUK win the "People's Choice Award" at this year's @SmileyCFA - it's quick and easy to vote:
https://t.co/3owN3f1JpD
@NP_Canada @NiemannPickOz @niemann_pick @NPC_Argentina @myraredisease @eurordis
#shortfilm #awareness #community #inpdr
2 DAYS LEFT to vote @NiemannPickUK as People's Choice Award @SmileyCFA We're proud to even be Finalists, however this would be HUGE for awareness of rare diseases - thanks! @GeneticAll_UK @CheckOrphan @RareDiseases @rarediseaseuk @RareDR @RareRevolutionM
https://t.co/rKhwyLUhbi
Pleased to be part of this year's @WORLDSymposia - fantastic opportunity to connect with so many others working in the field for positive progress! #WORLD #INPDR
Join the INPDR International Niemann-Pick Disease Registry in raising awareness and hope for those living with rare diseases on Rare Disease Day. Together, we can make a difference!
#INPDR #Registry #HopeforRare #ShareYourColors
The INPDR is perfectly placed, with patient and clinician input, to help observe the course of NPD and understand the variations in different treatment and outcomes through high quality data.
Join the PRD today: https://t.co/1kmzZJC2hO
#PatientReportedDatabase #PRD #INPDR
If you're attending our #AnnualFamilyConference & #InteractiveWorkshop make sure to say hello to the #INPDR team, you'll find them in the foyer of Wyboston Woodlands Centre! 👋
We are loving being a part of @NiemannPickUK's Annual Family Conference & Interactive Workshop!
If you are attending this weekend, look out for the #INPDR’s table and say hello. You can even register for the #PRD, it’s quick to do and contributes to real, positive change.
We are loving being a part of @NiemannPickUK's Annual Family Conference & Interactive Workshop!
If you are attending this weekend, look out for the #INPDR’s table and say hello. You can even register for the #PRD, it’s quick to do and contributes to real, positive change.
Jackie Imrie, INPDR Clinical Research Manager, is all ready with her stand at the SSIEM Annual Symposium - if you are in attendance why not pop on by and have a look?
#SSIEM #International #INPDR
By joining the INPDR as a NPD patient or parent, and sharing your experience, you’ll be helping us improve disease understanding, influence patient care and support global research efforts @nnpdf @inpda_org
Learn more and support us, here: https://t.co/TPVNURk2EM
#INPDA #INPDR
We are pleased to introduce a new look INPDR International Niemann-Pick Disease Registry as we push on to a new and exciting chapter for our community! Check out our brand new website, here: https://t.co/TPVNUR2rgc
#progress #community #INPDR
Many thanks to NPUK Social Media Assistant Danciu Rareș for helping to put these event lanyards together. Don't they look great...😉
#dreamteam #community #International #NPUK #INPDA #INPDR
We love this image as it shows some of the incredible members of the INPDR community who have supported our journey over the years…and there’s so many more groups and individuals across the globe!
#GlobalNiemannPickAwarenessDay #InternationalNiemannPickDiseaseRegistry #INPDR
We are currently preparing similar changes for our ASMD database and will be excited to update you on progress on these changes soon... #patientregistry #raredisease #registry #International #INPDR
Great news from @RushUniversity Medical Centre in Chicago, with R&D approvals in place, Rush will soon be ready to register patients in the INPDR. A big thank you and well done to Dr Liz Berry-Kravis and her colleagues on reaching this milestone #inpdr #registry #progress
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