Director of Membership at the National Organization for Rare Disorders. My sister @flippymomof3 has pulmonary hypertension (rare pulmonary disease, dx 1998).
Washington, DC
Joined August 2009
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Debbie Drell retweeted
FDA wants to hear your perspective on individualized cellular and gene therapies (CGTs) - @DebbieDrell
@US_FDA
#Cancer #CellularAndGeneTherapies #CGTs #FDA #OncoDaily #Oncology
oncodaily.com/22529.html
Debbie Drell retweeted
“You are not alone… continue to be positive and keep telling your story.” @Coach_Myrick #LivingRareForum @RareDiseases @RareAction #rareaction
Debbie Drell retweeted
.@PattyBurks65 (@CF_Foundation): Someone said earlier, '[Having a #RareDisease] sucks. Absolutely. But #ClinicalResearch advancements for #CysticFibrosis moved forward because of patient participation. You are awesome and there is nothing you cannot do." #LivingRareForum
Debbie Drell retweeted
Grooving and moving at the #LivingRareForum! Looks like the #RareDisease community is rocking Cleveland!
Debbie Drell retweeted
My service dog Rocky is ready for me to take the stage at the #LivingRareForum to talk about ableism and parenting with a rare disease.
Debbie Drell retweeted
Excited for the Living Rare Living Stronger Forum to begin. Starting the morning off with great music!#LivingRareForum #RareNotLess #Cleveland
Debbie Drell retweeted
Our #raredisease story: unexplained seizures, a Mom’s PhD journey, and finally answers. @LGS_Foundation @RareDiseases @DebbieDrell @GlobalGenes @NIHDirector @rarediseaseday #rarediseaseday2019 @Child_Neurology @ORDR themighty.com/2018/01/fighti…
Debbie Drell retweeted
The CDC is now recommending that some fully vaccinated people wear masks indoors in areas where the coronavirus is circulating widely.
It recommends all teachers, staff and students in K-12 schools wear masks — even if they're vaccinated.
n.pr/3l3Cwve
Debbie Drell retweeted
Spotted at #WODCUSA (@OrphanConf)! NORD Director Of Membership Debbie Drell is currently moderating the panel, "A Look at #RareDisease Listening Sessions and PFDDs with NORD and the FDA!"
Debbie Drell retweeted
Join us for the #RDCADAP 2021 Virtual Workshop on September 14! Attendees will get a first look at a platform demonstration and hear about the experience of working with the RDCA-DAP from stakeholders. Register for the free event here. Sign-up: bit.ly/RDCA-DAP21
Debbie Drell retweeted
Welcome to the new national PK Deficiency Foundation! Meet us at our website. pkdf.org. Be sure and sign up to receive updates and news and follow us here.
Debbie Drell retweeted
🎙️ New #NORDpod episode! Listen now to hear Heidi Ross, NORD's Director of #Policy, as she talks all thing #RareDisease Advisory Councils (#RDAC)-including how you can get involved in your own state.
Tune in here or wherever you get your podcasts: apple.co/2Zun6UL
ALT The graphic has a gray textured background with a light blue wave. The NORDpod logo is present in blue and orange as well as text reading "NEW EPISODE with Heidi Ross NORD's Director of Policy." NORD logo and Offscrip Media logo are on the bottom left. To the right is a circle with a headshot of Heidi Ross.
Debbie Drell retweeted
👩🔬As scientists sometimes we focus too much on publishing & every now and then we need to be reminded of why we do what we do.
For those who need a reminder, today is Undiagnosed Children's Day.More than 65000 children are born in Europe each year with an Undiagnosed condition.
Debbie Drell retweeted
🌟Excellent energy at the @UDNIss Patient Engagement Group meeting, planning how to bring more of the patients’ perspective into UDNI. Lots of ideas and motivation! 💡
#Undiagnosed #RareDiseases
@RareDiseases @eurordis @WilhelmFound
Debbie Drell retweeted
New #webinar: "Creating Your Medical Advisory Board” on March 10 at 2:00pm ET. This webinar, presented as part of #NORD’s RareLaunch® program, will inform #raredisease #nonprofit leaders about the process of developing a medical advisory board. Register: bit.ly/2OAL1iY
Debbie Drell retweeted
New episode of @NORDpodcast? ✅
Listen to @MatthewZachary, @DebbieDrell & Mary McGowen, former ED of @TheMyositisAssc discuss #pivoting during #COVID19!
🎙️: nordpod.org
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Debbie Drell retweeted
Episode 5 of #NORDpod: The #VoiceOfRareDisease features @MatthewZachary, @DebbieDrell & Mary McGowen, former ED of @TheMyositisAssc as they discuss how to pivot and handle #crisismanagement during #COVID19.
Listen, rate, review and subscribe: nordpod.org
Debbie Drell retweeted
#SickleCell survivors now have hope for a better quality of life with #Oxbryta! A new #FDA approved medication that aids in making red blood cells healthy. Thank you #NORD for recognizing the #SCD community. #RareImpact
Sickle cell advocate presents the #RareImpact Award 2020 Industry Innovation Award to... Global Therapeutics
Debbie Drell retweeted
@peterframpton Congratulations on the Rare Impact Award and raising awareness of Inclusion body myositis. #rareimpact An honor for me to help introduce you.