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
Does someone in your family live with a #raredisease?
Need support?
Curious about what others do to support their loved ones and stay sane?
Listen in on a @RareDiseases virtual event for National Family Caregivers Month:
rarediseases.zoom.us/meeting…
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!
“every rose has it’s thorn” 🎶🤘🏼
Me and this young’n had front row seats to hear the awesome @billybrownmusic at #LivingRareForum
thanks, @RareDiseases!
“when you join NORD @RareDiseases, you get a whole new group of friends who just get it.”
-Pam Mace, RN, Executive Director of @FMDartery
I just got a shout out from @pdmace2 at #LivingRareForum 😊
“I worked with NORD @RareDiseases to get my rare disease listed… we now have 17 registry centers in the united states doing research on this disease… one person can make a huge difference and I want to provide hope”
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.
At @RareDiseases event in Cleveland, rare kids are VIP rock stars!
I love the literal red carpet roll out for children living w #rarediseases and their siblings.
#LivingRareForum
Debbie Drell retweeted
Excited for the Living Rare Living Stronger Forum to begin. Starting the morning off with great music!#LivingRareForum #RareNotLess #Cleveland
“in a world full of definitions, be undefined. I have a rare disease but I am not my rare disease.”
-Kyle Underwood, MHA, speaking of resilience at #LivingRareForum
1. Find your PEOPLE
2. Keep being PERSISTENT
3. PRIORITIZE your passions
4. Choose to think POSITIVE
5. PAUSE and consider other people’s PERSPECTIVES
Words to live by shared by Sarah Tobias, keynote speaker at #LivingRareForum.
Marshall Summar MD, @genedocrare is not only the Director of the @raredisease Institute at @ChildrensNatl Hospital…
he is a round-the-clock fighter for rare disease patients and their families!
Super busy, he travelled to Cleveland to support #LivingRareForum
NORD’s #LivingRareForum is kicking off with a packed and socially-distanced ballroom.
Thank you @RareDiseases!
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…
How are rare cancers different than common cancers in diagnosis, treatment and research?
What about underserved communities? Are the disparities in access to care and treatment worse for marginalized groups?
Learn more on 9/30 #RareCancerDay event.webcasts.com/viewer/sh…
