We spoke with @Durhane Wong-Rieger, PhD, an influential rare disease advocate, about the upcoming RARE Advocacy Summit, where we'll gain invaluable insights from leading experts, network with advocates & more! Register: https://t.co/uocV1GWVY0
#RAREAdvocacySummit#CareAboutRARE
Episode #1 of The Gene airs tomorrow night at 8/7. This @kenburnspbs production will demonstrate how our understanding of genetics has evolved over the decades and how deeply our future will be impacted by it. We will live-tweet tomorrow’s episode. Don’t miss it! #TheGenePBS
Unfortunately #ESHG2020 in Berlin had to be cancelled due to the current situation. But “ESHG 2020.2 - Live in your living room” is scheduled as virtual conference from June 6-9, 2020. Check https//2020.eshg.org for more news as of April 10!
@Millennial__MD Please read Scene 11 Malware Returning - you will find it interesting in light of the Coronavirus disease (COVID-19). @pentpow#randjpizzarocks
“Fast Track designation underscores the urgent need for a therapy that treats the underlying cause of propionic acidemia.”
@US_FDA grants @moderna_tx fast track designation for propionic acidemia. #raredisease#CareAboutRare
https://t.co/lhbLE4Srsp
Another year, another #NORDSummit - highlight as always was connecting with fellow rare moms!!! Also great to hear from @SecAzar about the Administration’s commitment to the rare community - look forward to working with the Department on next steps.
Over the next four years, NIH and the Gates Foundation will invest $200 million in research toward genetic cures for sickle cell and HIV. https://t.co/Y6lmTr76AO
@Rey_ArborMetrix I'll see you there tonight! I'm easy to find in the crowd, probably the only #Amish attending. Don't worry, I don't bite, unless you want me to.
Rare isn't scarce, rare isn't infrequent, rare isn't remote!
#RareDiseaseDay is entering a new phase, focusing on reframing what it means to be rare for the next decade of the campaign. We need everyone to get involved and join the movement to reframe rare!