We are at NORD conference! Can’t wait to learn, network, and build our team as we fight to #curemsd ! #NORDSummit #CareAboutRare #strongertogether
Inspiring, honest opening keynote at NORD #NORDSummit by Terry Jo Bichell. ‘The promoter of the grit gene is caffeine’ #lucktakesgrit
Doing well by doing good— investment in drugs for rare disease patients. Profit and social impact. Jessica Chutter from Morgan Stanley speaking #NORDSummit
The rare occurrence when the three of us are under one roof! Love and respect for these woman! Swapna Kakani, MPH PTEN Foundation US Debbie Drell #NORDSummit
Pleased to represent United Mitochondrial Disease Foundation at the NORD #NORDSUMMIT learning about U.S. FDA considerations in regulating drugs for rare diseases like mito.
From the lab bench to communicating our findings at #NORDSummit , I had a great time with my mentor Julian Halmai. I loved speaking w/ everyone about the exciting data from our approach for X linked disorders such as #RettSyndrome & #CDKL5 deficiency. Fink Lab NORD
We are so grateful to be selected as a Top Abstract at #NORDSummit !🎉 It’s our honor to share our work on the development, publication, and distribution of our guidelines with the #raredisease community!
Special thanks to Heidi Carson, guidelines co-editor, for representing us!
Access to prenatal testing pediatric and #raredisease challenges insurance companies, reimbursement and cost are not moving at the same pace #NORDSummit #NewbornScreening
Thank you Stephanie Stephanie Fischer for representing RUN at the #NORDSummit ! So many incredible advocates will be there to collaborate. Thank you NORD NORD for your hard work and dedication to the rare and undiagnosed community! #RareDisease #Undiagnosed
Panel discussion on data protection and social media. №1 target abuse is health insurance number. In Europe it's social security number and date of birth. Be aware of what you post! #NORDsummit
Excited to present two Cure VCP Disease projects at the NORD #NORDSummit taking place Oct 18-19, 2021. I'll be presenting on natural history study collaboration and Allison Peck will be presenting on our standard of care project. See you there! #vcpdisease #ibmpfd
Access to and coverage for expanded #carrierscreening can be a critical piece in helping families avoid a diagnostic odyssey - Aishwarya Arjunan, MS, MPH, CGC,CPH (she/her/hers) #nordsummit NORD
Thank you and congratulations to our top five poster abstract submitters for their insightful presentations during the “Lightning Round Poster Presentations.” Check out their posters in the #NORDSummit exhibit hall!
Of the 10% who get to participate in trials 80% are white, but the population is 40% minority. How can improve inclusivity? #NORDSummit
Grateful for the opportunity to serve on the Advisory Board of RUN & represent the organization at #NORDSummit , although I wish the amazing founder Gina Szajnuk was here too.
I was at the #Pain AdvocacySummit19 in Dallas this weekend w amazing people!
Advocate 4 Chronic Pain > nationalpainreport.com/how-to-advocat…
National Pain Report U.S. Pain Foundation NORD #NORDSummit uspainfoundation.org #Pain #RareDisease #patients #parents #clinicaltrial #FDA #NIH #congress
We are here for @IndoUSrare Reena Kartha #rarediseases @rarediseases #indiandiaspora #CrossConnection #indous #Nordsummit
Stop by our poster 36A
#FinkLab has poster presentations on X-Linked #neurologicaldisorders at #NORDSummit Monday & Tuesday! Check out Julian Halmai for an update on #CDKL5 + Casiana Gonzalez for an update on #Rett 🧠 NORD UC Davis Stem Cell