So excited to be moderating a #NORDsummit Lunch & Learn with Susan Thornton, CEO of Cutaneous Lymphoma Foundation @skinlymphoma —“Respecting Our Roles: Patients Organizations & Industry” 🤗
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Michele Rhee
10K posts
Michele Rhee
@michelerhee
#RareDisease & #AYACSM / #AYA Cancer #PatientAdvocate| Board of @CostsOfCare | Overall enthusiastic person! | Tweets are my own.
Boston, MA Katılım Nisan 2009
295 Takip Edilen1.6K Takipçiler
I love #NORDsummit. It’s like a family reunion plus an informational meeting plus group therapy. #PatientAdvocacy #RareDisease
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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)
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@BarbyIngle Your cheerleading is loveliest welcome back! So happy to see the fabulous @BarbyIngle online!! 🥰
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@michelerhee @ipopi_info @martinepergent @JohanPrevot Hey! A #RareStar sighting. It's @michelerhee!!!!! So glad to see you online again!!!!!!!!!!!! Enjoy the upcoming event! 🦄🦄🦄🦄🦄🦓🦓🦓🦓🦓
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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
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Michele Rhee retweetledi
Join us @ipopi_info #IPIC5 biennial meeting for this educational #X4Pharma symposium on #WHIMsyndrome and get material at the @ipopi_info booth
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Michele Rhee retweetledi
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: mailchi.mp/ipopi/ipic-tra…
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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
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Michele Rhee retweetledi
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 moonshot.costsofcare.org
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Michele Rhee retweetledi
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
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@d2merino Thank you! You can find some general info on RDACs here: rarediseases.org/projectrdac/, and I'll keep you updated as things progress with the MA RDAC!
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@michelerhee That is so awesome! Congratulations, @michelerhee 👏 I would love to learn more about the work of the RDAC! There is so much to do!
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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: bit.ly/3wW6O5V
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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: thesamfund.org/get-help/grant… #AYACSM
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@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!
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@michelerhee @ThanksCancer I don’t know what to call myself, but you made me think. How about cancer alum. I don’t have active cancer now but it is always on my mind and going through it has changed my life.
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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
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@michelerhee @ThanksCancer I quite like Thriver at the moment because it’s true that I’m thriving right now but that is fluid as it may not always be the case, as an occupation I describe myself as a care provider, as I believe that it best describes my professional role
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@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!
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@michelerhee Ugh to thriver and warrior. Horrible and cringey. And double ugh to any cutesy made-up words. Let us have some dignity FFS. I’m a cancer patient because I’m in active treatment. If I was cured, I’d say “I *had* cancer”. No special language tricks needed.
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