Top Tweets for #RareDiseses
Mayo Clinic Researchers Identify Eight New Genetic Mutations in Rare CSF1R-Related Disorder - Check the Link for More https://t.co/sWGtsQVnoq @MayoClinic #CSF1R #RareDiseses #BrainDisorders #OrphanDrugs
This is devastating audit of services for #TSC in Ireland; if this is how we are dealing with #rarediseses then we have major problems ahead @HSE_CDI @HSELive
Dean Suhr of the MLD Foundation provides an overview of the philosophy of their foundation when it comes to supporting research for metachromatic leukodystrophy #MLD #checkrare #rarediseses @MLDfoundation
https://t.co/s35S8AyplV
About to start: the 6th world conference on congenital disorders of glycosylation @FCTNOVA @worldCDG #rarediseses #margemsul
Last week I told members of the @OTSociety a story, that perhaps could be of interest to people developing #orphandrugs for #rarediseses, as I detail all the "other things" you need to bring a drug from the lab to the clinic. (๐short๐งต)
https://t.co/kwMPOJ5NJW
Thank you @PhenoTips for supporting #CORD through your wonderful #SpeakerSeries initiative
#Canada4Rare #RareDiseses #Education
The PhenoTips #SpeakerSeries was created to promote information exchange during the pandemic. For the past 2 years, speakers have been compensated in the form of donation & in 2021 alone the series has raised $5K for @raredisorders
Stay tuned for our #RareDiseaseDay announcement
Teams from @NCL_RareDisease have long-since worked with patients to ID relevant outcomes 4 RD research: @JWMDRC is part of a new, public-private project #DT4RD under @EJPRareDiseases using digital tools to assess mobility in different #rarediseses ! https://t.co/1Nx6vPMlu8 #PROMs
30M people in Europe are living with a #raredisease. On May 26, ARM SVP Global Public Affairs Paige Bischoff will join policymakers, patient advocates, & industry to discuss how the EU #PharmaStrategy could help make #genetheapy for #rarediseses a success: https://t.co/zwcvWxO5AH
The 2020 European Conference on #RareDiseses & Orphan Products @eurordis is held online. ๐ https://t.co/MnQod4iE46
Take part in the largest patient-led Rare Disease event #ECRD2020.
Pre-conference webinar: https://t.co/S2k2pKdUS8
#Share4Rare #patients #research #health
90 days to Boston Marathon! Ready to run for #rarediseses! Great overview on the success story of gene therapy with more approvals over the last years than ever before! #SLC6A1 to be next! https://t.co/Gv0MWTC845 @bostonmarathon @SLC6A1_Mom @wbz @jhboston26 @BostonGlobe
The Orphan Drug Committee arrived to Amsterdam! #rarediseses en Sloterdijk, Noord-Holland, Netherlands https://t.co/pwu6hoHCVK
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