Top Tweets for #IAMRare
Congratulations to @rawoodfound on two recent publications using data from the #IAMRARE® Hypothalamic-Pituitary Brain Tumors Patient Registry!
Published in @Biomed_MDPI and @SciReports, the studies highlight how patient-powered data can help researchers better understand #craniopharyngioma treatment priorities.
Learn about IAMRARE at https://t.co/sbHF9FcmL7
Your Voice Matters. Let Data Tell Your Story. Join the Facial Pain Registry today at https://t.co/olE4QJWrwn
#FacialPain #FacePain #FaceTodayTogether #PatientRegistry #FacialPainRegistry #NORD #IAMRARE #YourVoiceMatters #NeuropathicFacialPain
We are excited @US_FDA @NIH CURE ID’s @IDEpiHeather will be speaking at @RareDiseases Scientific Symposium! If you are planning to be there, please let us know. Check out her session “Innovations in #drugrepurposing for Rare Diseases” at 4:20 on Day 1. #raredisease #NORD #iamrare
Your Voice Matters. Let Data Tell Your Story. Join the Facial Pain Registry today by visiting https://t.co/olE4QJWrwn
#FacialPain #FacePain #FaceTodayTogether #PatientRegistry #FacialPainRegistry #NORD #IAMRARE #YourVoiceMatters #NeuropathicFacialPain
Due Jan 10! Support #RareDisease research and bring your data vision to life with backing from @CPathInstitute and the @FDA. Apply by Jan. 10 to receive funding to build a patient registry on NORD's #IAMRARE platform at a reduced cost. Info here: https://t.co/gPE4ne9JqC
Your #RareDisease data can drive discovery. Applications are open for funding to create a new patient registry on the NORD #IAMRARE platform. Supported by @CPathInstitute & @FDA, groups can launch a #PatientRegistry at a reduced cost.
Apply by Jan. 10: https://t.co/gPE4ne9JqC
The #FDA funds natural history studies to speed #RareDisease drug development, and NORD can help with your application.
Our #IAMRARE platform provides ready-to-use infrastructure and expert guidance to create high-quality #registries. Learn more: https://t.co/bJDJ3hns26
Ready to start your #RareDisease registry or research study?
NORD’s expert-built #IAMRARE® platform supports 20,000+ participants with tools designed for rare disease #research: custom surveys, mobile engagement, and #FDA input.
Learn more: https://t.co/GeBwa68X06
The #Chondrosarcoma Foundation (@CS_Foundation1) built a patient registry with NORD’s #IAMRARE® platform to drive research forward for their #RareDisease community—ensuring data is high-quality, standardized, and ready for use by researchers. Learn more: https://t.co/GeBwa68X06
Patient registries are key to advancing #RareDisease research, but building one isn’t easy. NORD’s #IAMRARE® platform guides advocacy organizations with technical support and long-term partnership. One example is @CureCalpain3.
Learn more at https://t.co/GeBwa68X06.
Looking to design a patient-centered natural history study?
NORD’s #IAMRARE® data and research platform was built by and for #RareDisease communities—offering custom survey design, robust patient engagement via mobile app, and seamless collaboration with patient advocacy organizations.
With @FDA-informed development and a user-friendly interface, it’s the tool researchers trust.
Launch a study designed for rare disease populations: https://t.co/8X8AzHD0Xj
#NORD is thrilled to announce a request for applications for the implementation of two new patient registries on the #IAMRARE® platform! Funding to create and launch a patient registry at a discounted rate is made available through the Rare Disease Cures Accelerator – Data and Analytics Platform (RDCA-DAP®), a collaborative agreement with the @CPathInstitute funded by the @FDA.
Apply by Jan. 10, 2026: https://t.co/0OXsJLNH0S
Build your own #PatientRegistry with guidance and support from NORD.
Our #IAMRARE platform is designed for #RareDisease patient organizations. Own your data, sponsor your study, and design custom surveys for your community in our mobile app.
Learn more: https://t.co/GeBwa68X06
Did you know NORD’s #IAMRARE® research platform supports 45+ #raredisease studies, with 20,000+ participants worldwide?
IAMRARE data has been cited in 30+ peer-reviewed publications and contributed to one #FDA-approved therapy so far.
Learn more at https://t.co/GeBwa68X06.
The #FDA is funding natural history studies that accelerate #RareDisease drug development – and NORD can support your application!
Our #IAMRARE platform offers turnkey infrastructure and expert support to build high-quality #registries. Learn more: https://t.co/bJDJ3hns26
NORD’s #IAMRARE Registry Program has a new peer-reviewed publication co-authored with the #DesmoidTumor Research Foundation, @DTRFoundation. Their IAMRARE registry is collecting data that is advancing understanding and care for this #RareDisease.
Read the article: https://t.co/O6hwWZA36w
Learn more about IAMRARE at https://t.co/InXznSNDom.
NORD’s new #IAMRARE app is here! Whether you're managing a #rare condition or support a loved one, you can share health data to accelerate research, improve care, and drive change.
✅ Easy-to-use
✅ Secure
✅ Real-time updates
Download now!
Google Play: https://t.co/Gq07WhOMqU
Apple Store: https://t.co/5F75Hhj81z
The #LennoxGastautSyndrome #IAMRARE registry and natural history study is almost here! Savannah is cheering us on! @RareDiseases @LGS_Foundation #whereissavannahrainetoday #NORDSummit
The #FDA is funding natural history studies that accelerate #RareDisease drug development – and NORD can support your application!
Our #IAMRARE platform offers turnkey infrastructure and expert support to build high-quality #registries. Learn more: https://t.co/bJDJ3hns26
Arizona Rare Disease Advocates - Rare Across America 2025 meetings are taking place over the next two weeks with our legislators and staff! #RareAcrossAmerica #IamRare #CareAboutRare #ShareYourStory #MakeADifference #MyPainIsLike #RareDisease
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