Latest posts tagged with #rddnih on Bluesky
Its Rare Disease Day®! Yesterday at #RDDNIH, we shared outcomes from our #CME initiative on #RettSyndrome. In partnership with @nordrare.bsky.social & @rettsyndrome.bsky.social, we highlighted how patient-centered education supports clinicians across diagnosis, treatment, & care. 🔗 bit.ly/4snliIB
easiest way to boost my mood is to call me Dr Lauren Testa, btw 😂
Thanks to all for your kind words about my talk. I felt so supported by the #RareDisease community today. #RDDNIH
Ugh...this makes me so sad and angry
As I sit here listening to the NIH/NCATS Rare Disease Day #RDDNIH presentations from advocates and patients talking about how we need the NIH and partnerships to advance research and lifesaving treatments
"Turning progress into cures" -JJ
@laurenctesta.bsky.social Saw your talk just now. You're so inspiring. And thanks for highlighting the complex emotions of being a patient-scientist.
I look forward to following your next chapter.
#raredisease #rddnih #rasopathies #hope #precisionmedicine
Today’s the day! We’re at #RDDNIH spotlighting how advocacy partnerships shape real-world, patient-centered education in #RareDiseases. Partnering with @nordrare.bsky.social + @rettsyndrome.bsky.social, this CME initiative brings real patient experiences into case-based learning. 🔗 bit.ly/4cen8Xp
Today, I’m getting ready for my #RDDNIH talk and thinking of all the people out there, including my own family, who have lost loved ones to Marfan syndrome. I know my case has been “mild” but I hate this disease.
Update, my #RDDNIH talk is now at 2:20PM instead of 10:50AM this Friday, Feb 27! Live-streamed and in-person. Looking forward to it! #RareDisease #Marfan #CRISPR
excited to be giving a Rare Story at 10:50am at #RDDNIH! I don’t get to publicly speak about what it’s like to be a #RareDisease patient working on genetic therapies very often so I’m quite excited!
We're heading to #RDDNIH to share outcomes from a #CME initiative on #RettSyndrome, highlighting patient-centered & outcomes-driven design to help close gaps in #RareDisease care. 🌟
Stay tuned for poster details & explore rare disease programs here: bit.ly/3Mq3SM3
@nordrare.bsky.social & IRSF
