Michele Rhee

#RareDisease & #AYACSM / #AYA Cancer #PatientAdvocate| Board of @CostsOfCare | Overall enthusiastic person! | Tweets are my own.

[Michele Rhee @michelerhee]

So excited to be moderating a #NORDsummit Lunch & Learn with Susan Thornton, CEO of Cutaneous Lymphoma Foundation @skinlymphoma —“Respecting Our Roles: Patients Organizations & Industry” 🤗

[Michele Rhee @michelerhee]

I love #NORDsummit. It’s like a family reunion plus an informational meeting plus group therapy. #PatientAdvocacy #RareDisease

[Michele Rhee @michelerhee]

Earlier diagnosis is so important in rare diseases like PAP/aPAP. What are the symptoms of #PulmonaryAlveolarProteinosis?
- Shortness of breath
- Cough
- Chest pain
- Fatigue
- Low oxygen
- Respiratory failure (in severe cases)

[Barby Ingle Official @BarbyIngle]

Have a PAP'n good time! #PulmonaryAlveolarProteinosis
Thanks for doing Pizza with Purpose!!!!!!!!!!!!! #PizzaWithPurpose #Awareness

[Michele Rhee @michelerhee]

@BarbyIngle Lol, thank you, Barby!! 🤣

[Michele Rhee @michelerhee]

So excited for the @PAP_Foundation PAP-a-palooza at @UCLAHealth! #PulmonaryAlveolarProteinosis

[Michele Rhee @michelerhee]

@BarbyIngle Your cheerleading is loveliest welcome back! So happy to see the fabulous @BarbyIngle online!! 🥰

[Michele Rhee @michelerhee]

I am so excited to be traveling for the first time in over 2 years—and for an amazing reason: #IPIC5! Thank you @ipopi_info @martinepergent @JohanPrevot for organizing such a valuable & enlightening conference! #RareDisease

[Nizar Mahlaoui M.D., M.P.H., Ph.D. @MahlaouiNizar]

Join us ⁦@ipopi_info⁩ #IPIC5 biennial meeting for this educational #X4Pharma symposium on #WHIMsyndrome and get material at the ⁦@ipopi_info⁩ booth

[IPOPI @ipopi_info]

Ready to make plans to travel? Got new research to present?
We look forward to welcoming you at #IPIC5 and are overjoyed to inform that application for #travelgrants is now open!
All details: https://t.co/ldiMVkElBu

[Michele Rhee @michelerhee]

It's been over a decade since @CostsofCare was just a twinkle in @neel_shah's eye--amazing to see the evolution to this weekend's Affordability Accelerator! Thank you @ReshmaGuptaMD @jordansharmon @ChrisMoriates @SL_Wallingford!!

[Costs of Care @CostsofCare]

3-2-1 🚀 Our Affordability Accelerator starts tonight! Merging the 🌎s of healthcare leaders, patients, providers, financial managers & navigators - working together towards solutions that improve the #affordability of care @familyreach #affordabilitymoonshot #lifeoverlifesavings

[Costs of Care @CostsofCare]

Had trouble sleeping last night? Us too! We were so eager to get up & get to work improving #patientaffordability for all! Can't wait to see what Day 2 of the Affordability Accelerator brings 🚀 #affordabilitymoonshot #lifeoverlifesavings https://t.co/MMRWLN6EXH

[Costs of Care @CostsofCare]

3-2-1 🚀 Our Affordability Accelerator starts tonight! Merging the 🌎s of healthcare leaders, patients, providers, financial managers & navigators - working together towards solutions that improve the #affordability of care @familyreach #affordabilitymoonshot #lifeoverlifesavings

[Michele Rhee @michelerhee]

@d2merino Thank you! You can find some general info on RDACs here: https://t.co/d9SQX9AcMO, and I'll keep you updated as things progress with the MA RDAC!

[Michele Rhee @michelerhee]

So honored and excited to be appointed to the MA RDAC! #RareDisease #PatientAdvocacy

[X4 Pharmaceuticals @X4Pharma]

Join us in congratulating our VP of Patient Affairs and Advocacy, @MicheleRhee, for her appointment to the MA Rare Disease Advocacy Council, established to better represent people with #RareDiseases in their communities. Learn about the #RDACs here: https://t.co/cEPWisBHWP

[Michele Rhee @michelerhee]

NOW OPEN: @ExpectMiracles1 Fall 2021 @TheSamfund Grant Application! Financial assistance to young adults as they regain momentum in their lives after cancer. Closes Aug 5: https://t.co/PNI0N7oWsu #AYACSM

[Michele Rhee @michelerhee]

@Purrfectly_Rare @livinlavidalopo

[Michele Rhee @michelerhee]

@DanaFer16014994 @ThanksCancer I kind of love the idea of being a cancer alum. It speaks to the knowledge & experience we've gained. We deserve diplomas!

[Michele Rhee @michelerhee]

Q1: How do you describe yourself? A cancer patient, survivor, thriver, warrior? Person diagnosed with cancer? Healthcare professional or provider? Researcher? Caregiver or care partner? Why/why not? #AYACSM

[Michele Rhee @michelerhee]

@vevshughes @ThanksCancer So happy you're thriving!

[Michele Rhee @michelerhee]

@katem02134 I go back-and-forth on the terms. I've tried some out and found they can help me mentally sometimes, but other times, they make me feel like I'm pretending to be more positive than I am. And I think you're absolutely right that different terms apply for different stages!