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RareDiseasePatient @rarediseasepatient.bsky.social · 09/01/2026

Corrected link: www.tiny.cc/rarediseasehope

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RareDiseasePatient @rarediseasepatient.bsky.social · 09/01/2026

💙💙💙🫂🙏🏻🙏🏻🙏🏻 Thank you so much!

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RareDiseasePatient @rarediseasepatient.bsky.social · 09/01/2026

Thank you so much for sharing & for all help.💙💙💙🫂🙏🏻🙏🏻🙏🏻

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RareDiseasePatient @rarediseasepatient.bsky.social · 06/01/2026

Another major life milestone, another horrible emergency: www.instagram.com/p/DTHyaLklD9... Can you help by donating any dirivitive of 55 ($0.55, $5.50, $55, $550,...) for my birthday?: Tiny.cc/RareDiseaseHope

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RareDiseasePatient @rarediseasepatient.bsky.social · 06/01/2026

⚠️EMERGENCY⚠️ I'm out of the (abusive) nursing home, with no monthly funds for an assisted-living facility. I may be homeless as of 9 Jan. Can you help, please? www.instagram.com/p/DTHW1m8lM0... To help with uncovered meds, please see the OTCS, esp. Quercetin, in my Amazon Wish List: Tiny.cc/7tujuz

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RareDiseasePatient @rarediseasepatient.bsky.social · 06/01/2026

#DisabilityDiscrimination by META: How I responded: www.instagram.com/p/DTG9i0kARl... I was offline during a critical emergency. Can you help, please?: Tiny.cc/RareDiseaseHope

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RareDiseasePatient @rarediseasepatient.bsky.social · 06/01/2026

Thank you so much for sharing.💙🫂🙏🏻 I'm so grateful for all help.

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RareDiseasePatient @rarediseasepatient.bsky.social · 15/03/2025

RE blog: "Trumpus" must become vernacular. RE Dems & Schumer: I'm suffering, w/ rare, fatal diseases, in a #NursingHome. My life depends on #Medicaid, #SocialSecurity, et. al. I spent excruciating energy begging #Senators to oppose the budget. My life didn't matter to these Dem Senators either.😢💔

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RareDiseasePatient @rarediseasepatient.bsky.social · 15/03/2025

I'm suffering, with rare, fatal diseases, in a #NursingHome. My life depends on #Medicaid, #SocialSecurity, et. al. I spent excruciating energy, incl w @meactnet.bsky.social💙, begging #Senators to oppose the budget. My life didn't matter to these, 10 Dem Senators either. @everylifeorg.bsky.social

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RareDiseasePatient @rarediseasepatient.bsky.social · 15/03/2025

Unforgivable.💔 It's difficult to know that my life doesn't mean anything to these #Democrats either.

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RareDiseasePatient @rarediseasepatient.bsky.social · 15/03/2025

Goddess, things are so terrible that I forgot about such a happy day. Here's to all of the glorious nerds in the world who celebrate #PiDay.🤓❤️ May sharp minds & education survive this period in US history.🙏🏼🫂

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RareDiseasePatient @rarediseasepatient.bsky.social · 15/03/2025

I'm suffering, with rare, fatal diseases, in a #NursingHome. My life depends on #Medicaid, #SocialSecurity, et. al. I spent excruciating energy, incl w @meactnet.bsky.social💙, begging #Senators to oppose the budget. My life didn't matter to those, 10 Dem Senators either. @msnbc.com @latimes.com

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RareDiseasePatient @rarediseasepatient.bsky.social · 07/03/2025

Thank you, @lawrenceodonnell.msnbc.com & @robinkelly.house.gov, for your attention to the impact of #Medicaid cuts on #NursingHomes. I'm bedridden, w/ comorbid, fatal, rare diseases, in a #NursingHome, all paid w/ Medicaid. If Medicaid is cut, I will be homeless & die. #SaveMedicaid; save my life.

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RareDiseasePatient @rarediseasepatient.bsky.social · 06/03/2025

Completely horrible & stupid, yes,... but I am your friendly #vegan, and #RareDisease patient invested in scientific advancement, here, to remind you that animal #vivisection is horrible & stupid anyway, for any reason.

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RareDiseasePatient @rarediseasepatient.bsky.social · 05/03/2025

...but a lovely statement about, EG, the 2/3 of #Medicaid -covered Americans, like me, in #NursingHomes, being a "flagrant waste of taxpayer dollars." #PresidentialAddress #PresidentialAddress2025 #JointAddress #NursingHome #SaveMedicaid

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RareDiseasePatient @rarediseasepatient.bsky.social · 05/03/2025

⚠️SAVE MEDICAID & HHS: SAVE MY LIFE.⚠️ I'm bedridden, with comorbid, rare, fatal diseases, in a #NursingHome, paid by #Medicaid (as is true of 2/3 of all US nursing-home patients). If Medicaid is cut, I will be homeless & die. Contact info. for key Senators is in my posted letter. #SaveMedicaid

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RareDiseasePatient @rarediseasepatient.bsky.social · 05/03/2025

The nonsense about Bobby leading the HHS didn't do me any good either.

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RareDiseasePatient @rarediseasepatient.bsky.social · 05/03/2025

This research additionally aids in the development of treatments & cures for #RareDisease. 😢💔🦓🤍

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RareDiseasePatient @rarediseasepatient.bsky.social · 04/03/2025

As International #WomensDay approaches, a reminder for the US: It wasn't #witches who were burned, drowned, & tortured; it was #women. & we are repeating history. There are times in history to gather #magic for common cause. #witch #witchsky #WitchesofBluesky #Salem #SalemWitchTrials #RoeVWade

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RareDiseasePatient @rarediseasepatient.bsky.social · 04/03/2025

I think that what has been necessary, for too long, is direct, magical (and responsible) action; mundane, human means are no longer sufficient for the danger & harm. There comes a time for #witches to gather, in the light, and unite energies for a common purpose in history (lest it repeat).✨🌛🌝🌜✨

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RareDiseasePatient @rarediseasepatient.bsky.social · 04/03/2025

Anyone ever notice how many of the Sprouts products we love are from Canada? And when our x-friends have to compensate and our chocolate chips & maple syrup become unaffordable...that may be a good thing because there will be no natural sedatives holding back a population of pissed-off women.😡

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

NB: I've been measuring morality in watching who celebrates what: We know a lot when the leader of a democracy is disrespected by a dictator & a misogynist in the oval, & the right celebrates. We know a lot when a network cuts @joyannreid.bsky.social, & the Nazis on X celebrate. Dumb, @msnbc.com.

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

Oh, @joyannreid.bsky.social, I wish that I'd known you were in LA. I'm l in a Medicaid-paid nursing home in the area, & would love to talk w a great journalist RE what this administration is doing to #disabled ppl & us in #NursingHomes again (after killing us, as a "sacrifice," during COVID).

An image of me, a white woman with shaved hair, looking up into the camera while lying down in a hospital bed in the dark. I am holding a white card with the handwritten words, "I am #NotYourSacrifice."

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

After the #NIH- #FDA #RareDiseaseDay event ☠️, & slashing of #HHS depts, I ask the #RareDiseaseCaucus to address the #RareDisease community. Letters asking Sen Wicker & Rep Bilirakis to resign their Caucus chairs are in my feed. @amyklobuchar.com @dorismatsui.bsky.social @everylifeorg.bsky.social

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

😥🦓💔 I still don't have an answer RE one of my treatments. The 1st life-saving auto injector for rapidly-fatal adrenal crisis was to finish trials & be approved by FDA this year, and now...?☠️💔 This destruction of the HHS (& all gov) is so horrific. I think that someone needs a visit by 3 ghosts.😡

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

Thank you for sharing. I've been wanting the Rare Disease Caucus chairs to make s statement to us about everything. It was weird enough that none of them were scheduled to speak. Since their recent votes, I've asked Sen Wicker & Rep B to resign their Caucus chairs. My letters are in my feed.

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

Hm. I was registered also, and I didn't receive a notice, but I did see the "postponement" on the webpage; I was expecting this, as the HHS departments are so affected by the chaos. I'm so sorry that we all won't be able to gather together this year.😞🦓

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

🤍🦓🤍 Please remember also that 2/28 is #RareDiseaseDay. #RareDisease patients have had our #NIH & #FDA trials & treatments disrupted, #CDC INFO removed & changed, #Medicaid voted against... ⚠️⚠️⚠️ Please, donate the #EconomicBlackout $ you save to rare-disease patients' fundraisers.

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

⚠️⚠️⚠️ Please also remember that 2/28 is #RareDiseaseDay. ⚠️⚠️⚠️ Rare disease patients have had our #NIH & #FDA clinical trials & treatments disrupted, NIH & CDC INFO deleted-altered, #Medicaid voted to be cut... ⚠️⚠️⚠️ Please donate the #EconomicBlackout $ you save to rare-disease patients' fundraisers.

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

Still having problems? The shortage consequences seem to have evened up on this side of the country...the dictatorship...I've been getting mine for weeks from the alternate SNF pharmacy I had to use, but also from my specialty pharm, which wasn't even filling saline orders for IVIG for a while.

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

⚠️⚠️⚠️ Did you know that the #OfficeforCivilRights is the #HHS dept. that handles #HIPPA violations for every American, #disabled or not? Have you ever had your, private, medical info. misused? Ever a malpractice claim? What about MAGAS who were (incorrectly) claiming HIPAA violations during COVID? ⚠️⚠️⚠️

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

🦓🤍 Today, 28 FEB=International #RareDiseaseDay. On this day, the world is celebrating 300,000,000 #RareDisease patients on the planet. And the US, by banning "#DEI," crippling NIH, FDA, CDC, slashing #Medicaid, & removing #discrimination protections, is killing the 30,000,000 rare patients here.😥

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

I'm #disabled, w fatal #RareDisease, in a #NursingHome. If #Medicaid is slashed, I will be homeless & dead. And now, the civil-rights dept. we w #disabilities need also will be gone. ⚠️⚠️⚠️ #Autocrats & #dictators go for #trans & disabled people first. Watch for states' #UglyLaws to be applied.😥 ⚠️⚠️⚠️

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RareDiseasePatient @rarediseasepatient.bsky.social · 01/03/2025

Yes, I don't have to use Cyrillic Keyboard to say, 😞😞😞 Dear President Zelenskyy, we are so sorry. Thank you for defending democracy. 💙💛

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RareDiseasePatient @rarediseasepatient.bsky.social · 28/02/2025

PLEASE, also remember that 28 FEB= #RareDiseaseDay.🤍🦓 ⚠️⚠️ #RareDisease patients have had NIH-FDA stop our clinical trials&treatments, NIH&CDC remove-alter INFO, #RDD2025 cancelled, & cuts to Medicaid=☠️. ⚠️⚠️ Please consider donating your boycott-saved $ to the fundraisers of rare-disease patients.

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RareDiseasePatient @rarediseasepatient.bsky.social · 28/02/2025

PLEASE, everyone: 🤍🦓 Remember that 28 FEB= #RareDiseaseDay. ⚠️⚠️ #RareDisease patients have had NIH-FDA stop our clinical trials&treatments, NIH&CDC remove-alter INFO, #RDD2025 cancelled, & cuts to Medicaid=☠️. ⚠️⚠️ Tomorrow, PLEASE donate your boycott-saved $ to the fundraisers of rare-disease patients.

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