Why does it take 7-10 business days (minimum of 2 more weeks my family is out $5000) to review a file? It has already been weeks and daily calls on my end. The complete disregard for the Honda customer experience just keeps getting worse. @Honda #worstcustomerexperience

This is the power of social media. You treat someone like garbage, and it will cost you much more business in the long run. I will post about this horrible customer experience that has cost my family $5000 and taken 22 business hours of my life daily. @Honda @HaltonHonda

Happy Nurse Week! We love nurses and love to celebrate their contributions to healthcare and health IT. #Nationalnurseweek #NurseWeek24 #Nurses

The #SwaayHealth community is a BIG reason for my recent professional success. You took me in as one of your own, believed in me and my #advocacy message to empower patients, and amplified it. I will be forever grateful for your support. THANK YOU! 😘

Could not be more deserving! @GraceCordovano is the GOAT! #swaayhealth

“The difference between healthcare and football is that we just don’t have that same team mentality. Everyone is working toward the same goal to improve patient outcomes, but all the stakeholders are working separately.” - @CareersKristy at #SwaayHealth

Day one of #SwaayHealth Conference didn’t disappoint! I am representing my fellow #rare patients and caregivers, soaking in the learnings, which I will bring back and share. Really missing my conference partner in crime, @RareDiseaseDad 💚. You are here in spirit, Adam!

Thank you @thegr8chalupa for sharing my message and for the warm hug! So wonderful to meet you in person today. Keep fighting the fight. We are right behind you #patientrevolution #rarerevolution

“Think about Nike. They don’t manufacture one cleat and expect it to work for football, soccer, and rugby. They have athletes from each sport who actually wear that shoe engaged every step of the way from ideation to product development to launch." @CareersKristy #SwaayHealth. 🌟

Congratulations to the incredible and inspiring ⁦@stacy_hurt⁩!!! 👏🤩💗 #SwaayHealth

Integrated care is a long-term investment and commitment. So incredible to hear about @BurlingtonOHT journey since 2017 @peterskath1 #ICIC24

Why? Why are we still gatekeeping a patient’s information? This is MY body and MY data. Ugh. I thought we were past this. Gatekeeping causes unnecessary anxiety for patients who choose to access their PHI. This decision shouldn’t be made for me. #patientexperience

Many have attempted 2 illustrate the journey a fam undergoes when seeking a #GeneticTest that may lead 2 a #Raredisease dx, often these depictions fall short of capturing the true essence of the experience. I aim 2 provide a more accurate & factual representation of this journey.

Me and my #healthdata ❤️ This takes a lot of time to maintain as currently, the #healthdata I need, is not available online 😣 #Interoperability #patientsafety

hard stop. 🌍💖😊 #pinksocks ✨ love more. be kind in each now. ur already doing it. just keep doing that! 👊

People have NO idea how broken healthcare is until they have to advocate & legit FIGHT the system to just get basic needs for a patient covered. Sometimes I just want to give up, but every lost battle fuels my desire to change things 🥊 Strategy: Cry, lick wounds, dive back in

This piece is raw and real. Thank you @RareDiseaseDad for sharing your journey with such authenticity and honesty. I see you and I stand with you always 💚

This is the perfect visual for what it's like to advocate for rare diseases. 🤣 #RareDiseaseDay #CTNNB1

Data that serves patients. Kudos to #OpenNotes fit this leap forward, announced at #ViVE2024 🎊 #AI @TheLizArmy @myopennotes @chethanr @GraceCordovano

I was asked today if I own a a fax machine to send signed paperwork back to a caseworker. It is 2024. They don’t have electronic signature software And think patients own a fax machine. Why is healthcare so hard?? #patientexperience