Debbie Drell

Director of Membership at the National Organization for Rare Disorders. My sister @flippymomof3 has pulmonary hypertension (rare pulmonary disease, dx 1998).

[Debbie Drell @DebbieDrell]

Patient Voice in Rare Disease Medical Product Development Hybrid Public ... https://t.co/EMO37Lapei via @YouTube

[Debbie Drell @DebbieDrell]

@KAYAK help! I booked a trip using your app and I can’t cancel it for some reason.

[OncoDaily @oncodaily]

FDA wants to hear your perspective on individualized cellular and gene therapies (CGTs) - @DebbieDrell
@US_FDA

#Cancer #CellularAndGeneTherapies #CGTs #FDA #OncoDaily #Oncology

https://t.co/fgTrlEMgKR

[Debbie Drell @DebbieDrell]

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:

https://t.co/LsM0R0nTny

[Debbie Drell @DebbieDrell]

@tephie_ann love it!

[Debbie Drell @DebbieDrell]

The @rockhall of Fame did NOT disappoint as the venue for the @RareDiseases #RareImpactAwards gala!

[Debbie Drell @DebbieDrell]

excited for the #RareImpactAwards with @RareDiseases

[Jennifer Huron @JenniferHuron]

“You are not alone… continue to be positive and keep telling your story.” @Coach_Myrick #LivingRareForum @RareDiseases @RareAction #rareaction

[National Organization for Rare Disorders (NORD) @RareDiseases]

.@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

[National Organization for Rare Disorders (NORD) @RareDiseases]

Grooving and moving at the #LivingRareForum! Looks like the #RareDisease community is rocking Cleveland!

[Debbie Drell @DebbieDrell]

“every rose has it’s thorn” 🎶🤘🏼

Me and this young’n had front row seats to hear the awesome @billybrownmusic at #LivingRareForum

thanks, @RareDiseases!

[Debbie Drell @DebbieDrell]

“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 😊

[Debbie Drell @DebbieDrell]

“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 @DebbieDrell]

The @RareDiseases mascot has been spotted at the #LivingRareForum

[Kara Ayers @DrKaraAyers]

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 @DebbieDrell]

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

[Pam Mace, RN @pdmace2]

Excited for the Living Rare Living Stronger Forum to begin. Starting the morning off with great music!#LivingRareForum #RareNotLess #Cleveland

[Debbie Drell @DebbieDrell]

“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

[Debbie Drell @DebbieDrell]

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.

[Debbie Drell @DebbieDrell]

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