Top Tweets for #INPDA
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
Los registros de pacientes tienen gran importancia en las #Enfermedadesras Gracias a @inpdr_registry los pacientes de #ASMD y #NiemannPick pueden disponer de un registro a nivel internacional.
#INPDATarragona2023 #ProgressTogether
#INPDA
La Dra Mireia del Toro (@mireiadt) presenta los últimos avances en tratamientos para NPC en el congreso internacional científico-familiar de la Fundación Niemann-Pick España.
Dr Mireia del Toro presents the news about NPC treatments.
#INPDATarragona2023 #ProgressTogether
#INPDA
International Niemann-Pick Awareness Day: Thank you to all the incredible organizations that comprise the INPDA to consolidate our voices in global support and awareness of the Niemann-Pick community. Visit https://t.co/nGmOvO0Y7b to learn more.
#INPDA #niemannpickawareness
Next up in the Invisible Interviews series...the fourth and final instalment, Alec's Story feat. Alec and Gail Koujaian alongside narration by Sheila Reid. Can't wait to share this hugely entertaining but emotional short - many thanks to all involved ❤️ #shortfilm #npuk #inpda
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
Such a fantastic reception to @inpda_org & @inpdr_registry founder Jim Green's stirring message of what can be achieved as a community if we work together, and why our registry is central to this, at the first session of the INPDA Biennial Meeting '22 #nnpdf #inpda #orlando #USA
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 are pleased to share this awareness piece by Associated Press on ASMD Niemann-Pick disease type B (NPB), which features @inpda_org President Sandy Cowie: https://t.co/2rtX7PP7vm
#invisibleillness #ASMD #NPB #AssociatedPress #INPDA
INPDA recently held its Biennial meeting to discuss its goals and plans for the coming year. Council members were energized by the connections to one another and the shared commitment to advancing knowledge and treatment of Niemann-Pick diseases.
#INPDA #NiemannPick
The INPDA June 2021 Newsletter has been published. Check out all that's been happening in our global Niemann-Pick Community!
https://t.co/1fVF28qDj6
#NiemannPick #INPDA #NNPDF #RareDisease
@inpdr_tweets continues to break down barriers to participation with the news we have just further approved translations of our clinical database documentation into three more languages; Arabic, Dutch, and Italian #progress #collaboration #INPDA #INPDR
Thank you Cara for sharing your story - more needs to be done to shorten the diagnostic journey, which starts with greater awareness #thinkagain #thinknpc #INPDA #NPUK
Cara Gilmore, a patient with adult onset Niemann-Pick disease type C (NPC), discusses her diagnostic journey.
@nnpdf National Niemann-Pick Disease Foundation, Inc. NATIONAL NIEMANN-PICK DISEASE FOUNDATION
https://t.co/UErFLJA0ME
#niemannpick #niemannpickargentina #NPC #niemannpickdisease #INPDA #asmd #concientización Conocé más en https://t.co/J7B3Ou51Fb y ayudanos en la difusion republicando hacia tus contactos. https://t.co/SfSkezOB8f
The International Niemann-Pick Disease Alliance June 2020 newsletter has just been published. Read what our global Niemann-Pick community has been up to! Got to https://t.co/r01Hlcsaiz.
Supporting One Another. Supporting Our Community.
#INPDA #NiemannPick #raredisease
Today we join together with our international family of INPDA@inpda_org member organizations and together let’s #UseYourVoice to raise awareness of Niemann-Pick Disease around the world!
#NPC #ASMD #INPDA
Today we celebrate the FIRST ever Niemann-Pick Disease Awareness Day, which we hope will serve as a collaborative effort to shine a light on the rare and devastating condition, Niemann-Pick disease ❤
#USEYOURVOICE #INPDA #AFNP #NiemannPickDay #Awareness #NiemannPick
Today we join together with our international family of INPDA@inpda_org member organizations and together let’s #UseYourVoice to raise awareness of Niemann-Pick Disease around the world!
#NPC #ASMD #INPDA
A big thanks to Claudio from all Niemann Pick Community #ThinkAgainThinkNPC #NiemannPick #NPD #NPC #Awareness #AFNP #NPUK #INPDA #NiemannPickComunity #isoladeldiablo #storytimejohn
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