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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 20/02/2025

RDAC Bill (HB 2457) update: Work session scheduled for tomorrow (the 20th) @ 3:00pm. A "work session" generally means the committee will discuss one or more pieces of proposed legislation, but won't adopt changes during the session. 1/ #ORLeg #ORPol #DisabilityJustice #RareDisease #CripTheVote

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 18/02/2025

#ORPol #ORLeg: A Thread of 2025 bills affecting Housing, Eviction, & #TenantRights in Oregon Please scroll through. You can use legiscan.com to track bills you want to testify for/against. In this🧵: A few bills that would affect evictions, &/or housing opportunities. Most will harm tenants. 1/9

legiscan.com

LegiScan | Bringing People To The Process

LegiScan national legislative monitoring, reporting and API data services. Tracking legislation in all 50 states, DC Council and US Congress. Free public service and professional support accounts.

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 18/02/2025

#Oregon, This hearing was today, but you can submit written testimony for 48 hours following the posted start time for hearings. Please take a moment to support HB2967 (bans rental application fees) and check out some of the other proposed bills that will affect tenants in OR. #ORLeg #CriptheVote

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 14/02/2025

Disabled people have been warning about this since 2020. We've now got tons of scientific articles about post-covid illness/disability and the relationship between repeat covid infections and other health conditions. I hope you'll take a minute to follow some PWD and ask your friends to wear masks.

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 14/02/2025

#Oregon #ORLeg🧵 Let me draw your attention to another local bill! If passed, HB 2967 will impact EVERYONE who rents or hopes to rent in Oregon & increase housing equity by banning application fees. What does that mean? A landlord can't charge for background checks or to "process your application."

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Briana Mills, LMFT ♿️🏳️‍🌈 @brianamillslmft.bsky.social · 13/02/2025

Disabled people have been sounding the alarm about fascism for five years now. Pandemics lead to fascism. They excuse the deaths of the most vulnerable first. How do you not become vulnerable like us? Wear a mask! If you become disabled from Covid, they’ll excuse your death too.

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 13/02/2025

Response to attacks on marginalized residents' rights. Midwest West Coast

Bluesky post by Governor JB Pritzker of Illinois, dated February 6th, 2025 at 9:53AM: "On the day after the election, I made a promise to the people of Illinois: when it comes to threats to our freedom, health, or security, if you come for my people, you come through me."

Screenshot showing that Oregon governor Tina Kotek has no Bluesky posts. Additional context: After the 2024 election, Governor Kotek made a statement about looking forward to working with the incoming administration.

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 11/02/2025

Alt-text for the political cartoon posted by Whitehouse (who voted against his constituents' interests): Two people in front of a fenced off white building. A banner flying from the roof says, "We are stealing everything!" One person asks the other, "Why can't democrats have such clear messaging?"

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 10/02/2025

FYI, anyone can check politicians' voting history, bill sponsorships, financial ties, and known positions with Legiscan For example, here you can view the bill sponsors for HB 2457 and navigate to Sponsorships, Donors (FollowtheMoney), and Positions (VoteSmart) #USPol legiscan.com/OR/sponsors/...

legiscan.com

LegiScan | Bringing People To The Process

LegiScan national legislative monitoring, reporting and API data services. Tracking legislation in all 50 states, DC Council and US Congress. Free public service and professional support accounts.

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 10/02/2025

The rep discussed in this thread is also sponsoring an anti-transgender "biological sex" sports and bathroom bill this year and actually wants to secede from Oregon to join Idaho. It won't pass, but no civil rights movement needs "help" from someone like that. #ORPol #CripTheVote #ProtectTransKids

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 10/02/2025

So, you and your colleagues have stopped trying to obstruct the confirmation of people who want to loot and disenfranchise your constituents, and now you're lowering the bar to "answers?" If broke #disabled people could do more in 1977, so can you. #PWD - 25 days Democratic senators - overnight(?)

Black text on a white background: "The 504 Sit-in was a disability rights protest that began on April 5, 1977. People with disabilities and the disability community occupied federal buildings in the United States in order to push the issuance of long-delayed regulations regarding Section 504 of the Rehabilitation Act of 1973. Prior to the 1990 enactment of the Americans with Disabilities Act, the Rehabilitation Act was the most important disability rights legislation in the United States."

"The more successful sit-in occurred in San Francisco, planned by Judith Heumann, Kitty Cone, and Mary Jane Owen, lasted until May 4, 1977, a total of 25 days, with more than 150 people refusing to leave. It is the longest sit-in at a federal building to date. Close to 120 disability activists and protesters occupied the HEW building."

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 08/02/2025

Statement on House Concurrent Resolution 4 (establishing "Ehlers-Danlos Awareness Month" in #Oregon) OR HRC4 is a performative proposal put forth by a transphobic, anti-choice bigot. "Raising awareness" without action does nothing for the thousands of Oregonians who live with #EDS or other #CTD 1/

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 07/02/2025

Thanks for finally doing something. It's a start, but these shifts must continue until there's no danger to the American people, including our #transgender, #BIPOC, #unhoused, #disabled, and #undocumented siblings. We need to see that our representatives are willing to do your jobs, which means

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 04/02/2025

The #Oregon #Medicaid budget hearing is tomorrow! Please sign up to testify, if you can. If you can't, please submit written testimony. Details (including a sample letter) in this thread: #CripTheVote #ORLeg #NEISVoid #DisabilityJustice #DisCo #DisabilityCommunity #NothingAboutUsWithoutUs

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october "pre-order The Struggle Is Always Worth It now!" krausch @octoberk.bsky.social · 29/01/2025

Are you a healthcare worker that is still masking? Is it a struggle in your workplace (i.e. does your employer oppose covid precautions)? I want to hear from you for a story I'm writing! DM or email drmegkrausch@gmail.com #journorequest

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 04/02/2025

Matthew Cortland is very good at what they do! Their patreon has a free tier & frequently posts spoon-friendlier calls to action. #ORLeg #Medicaid hearings start tomorrow but regardless of local outcomes, it is imperative that we also do everything possible to protect Medicaid at the national level

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Senator Ron Wyden @wyden.senate.gov · 04/02/2025

My staff is hearing reports from Head Start programs in Oregon that they're still locked out of federal funds. My office is doing everything it can to get more info and get funds flowing before providers have to start closing their doors.

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 04/02/2025

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 04/02/2025

Unfortunately, I don't expect to notice differences in access (for most of my care), because we've been experiencing an ongoing shortage of local specialists, combined with deliberate discriminatory institutional barriers, for years. For example, the largest local hospital system has been allowed

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Julia Métraux @juliametraux.bsky.social · 02/02/2025

Hi, I am @motherjones.com' disability reporter. In the following weeks, I am very interested in hearing how tariff nonsense impacts getting your meds and medical equipment. My email to get in touch is jmetraux@motherjones.com. Reposts appreciated.

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 04/02/2025

#Oregon #Medicaid (Also known as Oregon Health Plan or #OHP) -Pays rents -Buys groceries -Provides air conditioners during heat waves -Covers all reproductive healthcare -Covers all gender-affirming care -Covers mental health services -Exempts members from all medical bills and prescription costs

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stillpressinon.bsky.social @stillpressinon.bsky.social · 04/02/2025

The Oregon Legislature is hearing testimony this week regarding the Medicaid Budget for 2025. Please submit testimony by Feb 5th at 1pm Sharing a personal story about how Medicaid has helped and we need expansion of coverage. Link to HB5025 olis.oregonlegislature.gov/.../Overview...

olis.oregonlegislature.gov

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stillpressinon.bsky.social @stillpressinon.bsky.social · 04/02/2025

Please take 30 min to watch this video to understand what's at risk with Medicaid right now. We need people to speak out beyond social media. Use your spoons to take action- reach out if you need help thearc.org/resource/cal...

thearc.org

Watch the Webinar: Medicaid Advocacy in 2025

Learn about the growing concern of potential cuts to Medicaid and what you can do to help protect it.

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 04/02/2025

Hello #Oregon! If you are, have ever been, or might ever be impoverished and/or #disabled (hint: the longer you live, the more likely it becomes), or consider yourself an #ally to poor and/or disabled people, we have another opportunity for you to help improve #access to care! Please read on: (🧵)

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 03/02/2025

#PDX - in case you haven't heard, New Seasons labor is on #strike after management fired their #union treasurer. Don't be a scab. Don't cross the picket line. kboo.org/media/125427...

kboo.org

Portland New Seasons workers strike after their coworker was fired

By John Giacoppe

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 03/02/2025

I just *know* somebody on here wants to talk about the OHSU "diagnosis matrix" (used to prevent disabled people from accessing specialists), or how it went with attempts to formally complain about any other number of shady things that hospital system routinely does to chronically ill patients.

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Kelly @broadwaybabyto.bsky.social · 02/02/2025

I'm working on an article about why telling disabled patients to 'lodge a complaint' when we're mistreated in hospital is NOT a solution Ironically I was just severely mistreated and may actually be forced to lodge a complaint If you've complained & been ignored and want to comment... reach out!

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 02/02/2025

Safe and accessible housing is a human right.

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 01/02/2025

As we've been seeing with how politicians treat our own little #RareDisease patient coalition. 🤦 #NothingAboutUsWithoutUs

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Lex McMenamin (they/them) @lexmcmenamin.com · 28/01/2025

we're told to run for office if we want to make "real change." Oklahoma organizer Mauree Turner became the US's first openly nonbinary elected. in 2023, as they wrote about @teenvogue.bsky.social, they were "silenced by my own colleagues in the legislature for standing up for trans health care."

teenvogue.com

I Ran for Office to Represent My Community and Was Punished

"We engaged in the system and they still tried to keep our voices out."

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 01/02/2025

In case you needed proof that HB2457 is NOT diverse enough, know that it has attracted 2 anti-trans co-sponsors. #Disability and being #Transgender go hand in-hand, and this includes #RareDisease. #Ehlers-Danlos occurs in the #trans population at at least 132x the rate it does in the general pop.

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 01/02/2025

There are just a few hours left, Disabled Oregonians & allies, to leave testimony telling the BH&HC Committee that HB2457 needs to center diversity and actual #Disabled people! Pls share #HelpSky #SignalBoost #Boost #Bump #DisabilityJustice #CripTheVote #ORLeg #ORPol #NEISVoid #DisCo #CommunityCare

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 31/01/2025

If you miss the deadline to submit testimony (or prefer another contact method) you can e-mail, call, write, or fax the members of the House Committee on Behavioral Health and Healthcare. You can find their names and contact information here: olis.oregonlegislature.gov/liz/2025R1/C...

olis.oregonlegislature.gov

Behavioral Health and Health Care House 2025 Regular Session - Oregon Legislative Information System

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Amyville Hoyrror @amyhoy.bsky.social · 31/01/2025

Did you know RFK Jr wants to send people with ADHD, mental illness, and addiction to work camps? He said: "We're going to build hundreds of healing farms where American kids can reconnect with America's soil." SOUND LIKE A BAD IDEA TO YOU? Call your senators NOW! You can leave a voicemail!

Infographic

Call TODAY to stop RFK Jr

The senate hearing is Jan 29 at 10a eastern

1. Call 202 224 3121
Call the Capitol Switchboard twice, to reach each of your 2 senators; QUICKLY say their name or "I'm not sure"

2. Use our simple script

Hello, my name is NAME, I'm a constituent and I live on STREET in CITY, STATE, ZIP. I'm calling to urge Senator NAME to oppose the nomination of RFK Jr. to be HHS Secretary. Thank you.

Optional: Give a reason

He opposes life-saving vaccines, like Polio

I/loved ones rely on Medicaid/Medicare and he isn't experienced or qualified to run it

infectious disease research is very important to me

Live calls are best. Voicemail, second best. Your senator's contact form is third best.

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Briana Mills, LMFT ♿️🏳️‍🌈 @brianamillslmft.bsky.social · 31/01/2025

I've said it before and I'll say it again: If disabled people aren't included in your revolution, it's not a true revolution.

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 31/01/2025

Here is a thread of some of the bare minimum necessary changes that *must* be reflected in any Oregon #RareDisease advisory council bill. 1. The RDAC must explicitly work to benefit/improve quality of life for both rare disease AND under-served chronic illness patients, regardless of rarity.

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 31/01/2025

We're also glad @travisnelson.bsky.social asked about diversity. We share these concerns, which is why we tried repeatedly to contact his office and invite him to author the bill. When Rep. Nelson wrote HB2002, he worked w/affected pts to center and meet their needs, which is not happening w/HB2457

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 31/01/2025

Hey #DisabilityCommunity We have mixed news - a bill has been submitted to the #ORLeg but it is NOT the bill that #disabled Oregonians requested, want, or need The first hearing has passed but there is still time to submit testimony asking our representatives to do better #NothingAboutUsWithoutUS

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 13/11/2024

We're not super active on social media, but now that so many more people are arriving here, maybe we'll try to be! #introduction #promosky #CriptheVote #DisabilityJustice #NEISVoid

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 09/08/2024

You can learn more about our project at the links in our bio. In the meantime, here is our fresh update and CTA #ORPol #ORLeg #NEISVoid #CripTheVote #DisCo #DisabilityJustice #NothingAboutUsWithoutUs

Flyer for the Oregon Rare Disease Advisory Council Cripple Coalition's August 2024 Update and Calls to Action. Three white-outlined, black boxes, with white text, on a light and dark grey zebra patterned background. The bottom box is shaped like the state of Oregon.

Text in the top box: "AUGUST 2024 UPDATE. The coalition has found a new bill sponsor and will be submitting for the 2025 session"

Text in the middle box: "Calls to Action"

Text in the bottom box: "1 - Disabled Oregonians: Please provide feedback on our draft bill; help us accurately represent your needs!
2 - Disabled Oregonians & Allies: Please join our coalition!
3 - Disabled Oregonians & Allies: Please share w/your communities!"

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Oregon RDAC Coalition @rarediseaseoregon.bsky.social · 09/08/2024

Hi everyone! Some of you might know us from other social media but, for anyone who doesn't, we're a coalition of disabled people who are working on a project that will (we hope) improve the lives of disabled Oregonians. Our last attempt was in 2023 and we're fresh off hiatus for 2025. #CripTheVote

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