If you're a medical specialist, please think about medical infrastructure before asking "have you talked to your GP about this?" Like...my GP asks me how to spell Ehlers Danlos whenever I see them. "Rare" patients do not often get GPs who have EVER encountered similar cases

My reminder as I prep myself to speak at Global Genes 💙💚 #GGSummit22 #GGSummit #RareDisease #CareAboutRare #GlobalGenes

In the words of Alice Payne at Global Genes Rare Champions of Hope dinner tonight... "Too Rare to Treat, Too Stupid to Repeat." #GGSummit22 #GGSummit #RareDisease #GlobalGenes #CareAboutRare #TooRareToTreatTooStuoidTooRepeat #2rare2treat2stupid2repeat

AllStripes team members Erin Smith, MPH, Mackenzie Abramson, MPH and @rarelikeher at the Global Genes RARE Patient Advocacy Summit in San Diego! #GGSummit #GGSummit22

Thank you so much! Hope you enjoyed the talk 🦓

I entered this #sweepstakes on #tunespeak. Follow the link below to enter & help me win. tnspk.co/pwar2lE

Here is the breakfast reception going on before the start of the Legislative Conference! We are set up in the Atrium, so if you’re in person, make sure to stop by and say hello 👋 #RareDiseaseWeek #RareDiseaseDay #CapitolHill #WashingtonDC #CareAboutRare

Maryland leader Stephanie Riordan from EveryLife Foundation for Rare Diseases prepping Mackenzie and others for tomorrow’s meetings with Senators Cardin and Hoyer! #RareDiseaseWeek #RareDiseaseDay #CareAboutRare

Follow along my journey in my new role with Global Genes this week at Rare Disease Week on Capitol Hill 🦓 #RareDC2024 #CareAboutRare #RareDisease #RareDiseaseDay #ChronicIllness #Advocacy #Advocate

"Lived experience experts are the only ones who know what it is all about" - Patrick James Lynch, filmmaker "Bombardier Blood" #RareDC2024 #CareAboutRare #RareDisease #RareDiseaseDay #ChronicIllness #Advocacy #Advocate

Legislative Conference Day in Washington D.C. getting us ready for Hill Day Meetings 🦓 #RareDC2024 #CareAboutRare #RareDisease #RareDiseaseDay #ChronicIllness #Advocacy #Advocate

End of Day 2 at #RareDC2024 🦓 So, ready to get on the Hill and get stuff done! #CareAboutRare #RareDisease #RareDiseaseDay #ChronicIllness #Advocacy #Advocate

Catch me on the Hill today 💚🦓 #CareAboutRare #RareDisease #RareDiseaseDay #ChronicIllness #Advocacy #Advocate

#resilience in the rare community is wonderful, but listen below to hear my love hate relationship with being #resilient in #RareDisease 🦓 #RareDiseaseDay #RareDC2024 #CareAboutRare #Advocacy #Advocate

#RareDC2024 #RareDisease #CareAboutRare #CapitolHill #Maryland #Advocacy

#RareDC2024 #RareDisease #CareAboutRare #CapitolHill #Maryland #Advocacy

Check me out talking to Senator Chris Van Hollen! #RareDC2024 #RareDisease #CareAboutRare #CapitolHill #Maryland #Advocacy