Khrystal K. Davis, JD

23.1K posts

Khrystal K. Davis, JD

@KhrystalKDavis

Founder @txrare Dedicated to Improving Access for the Rare Disease Community. Hunter’s (SMA Type 1) Zebra Mom 🦓. Patient Advocate. Speaker. Author. 👦 🧬🦓

Austin, TX Katılım Nisan 2015

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Khrystal K. Davis, JD@KhrystalKDavis·18 Nis

CLICK TO TWEET: Blocking copay assistance from counting toward patient deductibles is unfair and hurts Texans. #TXLege, support HB 999 with @FourPriceTX, @RyanGuillen, @stevefortx, @TomOliverson, @BhojaniForTexas, @juliejohnsonTX, and @moralesfortexas to ensure #AllCopaysCountTX!

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Adam Johnson - DadVocate@RareDiseaseDad·23 Eyl

Not again…first flight on @AlaskaAir since March when they wouldn’t allow me on my flight home due to my mobility scooter, & it’s another complete disaster. We’ve had enough of this in the #disability community. We still stand our ground & won’t back down. #RightsOnFlights #ADA

Adam Johnson - DadVocate@RareDiseaseDad

.@AlaskaAir didn’t allow me to fly because of my mobility scooter. 3.5 hrs later…rebooked to a different city, 1.5 hr drive to hotel & I’ll miss my #raredisease treatments/appts/tests tomorrow. I’m exhausted. Disability travel shouldn’t be this hard for anyone! Enough! #ADA

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Robert Popovian 🇺🇸 🇦🇲@PopovianPharmD·15 Ağu

Rebates don't make up all of the concessions provided by pharma companies - I can't believe in 2023 employees(& @CMSGov & @USCBO) are still only asking for rebate data Spread pricing hurts patients 👉 higher oop for patients, IOW, employers are exploiting their own employees

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Luke Rosen@lukebrosen·30 Tem

#ScienceSaturday

KIF1A.ORG@KIF1A

In this week's #ScienceSaturday, researchers investigate how microtubule-bound septins regulate the flow of kinesin and dynein traffic. kif1a.org/blog/sciencesa…

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Khrystal K. Davis, JD@KhrystalKDavis·25 Tem

@Gil_Bashe @MatthewZachary @OffScripHealth @FINNPartners Improving access and health outcomes is a top initiative for @txrare. Texas has the largest population and number of rural patients. Thanks for sharing, @Gil_Bashe.

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Khrystal K. Davis, JD retweetledi

GIL BASHE@Gil_Bashe·25 Tem

Thanks to @MatthewZachary, founder @OffScripHealth, for his passion and partnership with @FINNPartners around #ruralhealth. Matt was front and center in the conversation at "Heartbreak of the Heartland - Crisis in #RuralAmerica." #makeadifference

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Khrystal K. Davis, JD@KhrystalKDavis·24 May

Looking forward to the @HouseCommerce / @EnergyCommerce markup of the #MVPAct tomorrow/today – thanks to @RepGuthrie @RepAnnaEshoo @RepMMM @RepAuchincloss @RepJohnJoyce @RepScottPeters for sponsoring this bill. Learn more about the bill here: gene-therapies.org/post/what-they…

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SpaceX@SpaceX·23 Kas

Liftoff!

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Khrystal K. Davis, JD@KhrystalKDavis·16 Kas

Congratulations and welcome, Dr Gottlieb @GottliebLab. Research is hope in action, and we’re grateful you’re leading research efforts at @MDAndersonNews for cancer patients in Texas and beyond. #moonshot #MakingCancerHistory

Peter WT Pisters, MD@ppisters

Excited to welcome Dr. Eyal Gottlieb to @MDAndersonNews as Vice President for Research. As we propel our research mission defined by our strategic Breakthroughs theme, Dr. Gottlieb's leadership will be critical in our collective efforts to drive high-impact discovery. #EndCancer

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GIL BASHE@Gil_Bashe·10 Kas

It's urgent we improve people's health in #rural America! @walmart & @webmd unite national leaders to explore how we improve #ruralhealth. Join the conversation on Nov. 21st, Washington, DC! @CPegusMD @drjohnwhyte #healthequity #publichealth RSVP: eventbrite.com/e/improving-he…

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Stacy Hurt (she/her)🌻@stacy_hurt·18 Şub

@EMoriartyWade @livinlavidalopo @KhrystalKDavis @RachelleM_Dixon @addiengeorge @CureRareDisease @kmess44 @stern_sydney @cathsmstratton @rarespoonie @remember_girls @mepancure twitter.com/stacy_hurt/sta…

Stacy Hurt (she/her)🌻@stacy_hurt

Please join me for this free webinar, marking the launch of new #research into the #mentalhealth impact of a #raredisease diagnosis 📆2/22 ⏰11:30am EST 📍Register here: lnkd.in/dg_XYURS 👥@RBWConsulting #chronicillness #specialneeds #caregiver

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The REAL Dr. Dré@DrDre1914·21 Eki

I participate in clinical trials so that we can move science forward for sickle cell disease 🙌🏾

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THBI@txhbi·20 Eki

Deep dive with @SamHarless126, @DonnaHowardTX, and @RepWalle on what to expect in the upcoming Legislative Session during THBI’s Annual Policy Summit. #thbisummit #txlege

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Khrystal K. Davis, JD@KhrystalKDavis·21 Eki

@JesminSubrina I proudly followed you back. Gratitude!

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Subrina Jesmin (Arai) 217 times globally awarded@JesminSubrina·18 Eki

@KhrystalKDavis I am following you

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Khrystal K. Davis, JD@KhrystalKDavis·28 Şub

Happy Rare Disease Day 2022❣️ 🦓🧬❤️ We’re celebrating with Hunter as he gets his first #Spinraza treatment of the year. We are thankful and grateful that SMA has a treatment. Advocacy for treatments for every #RareDisease & patient. #RDD2022

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David S. Baskin@DavidSBaskin1·11 Eki

Honored to present out work at the CNS with DIPG using a novel molecule that is a selective mitochondrial chemotherapeutic not toxic to normal cells

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Khrystal K. Davis, JD retweetledi

Rodney E. Rohde, PhD "Doc R"@RodneyRohde·16 Ağu

Truly, an HONOR! Thank you again @pathologistmag

The Pathologist@pathologistmag

Congratulations to @RodneyRohde of Translational Health Research Initiative for making our 2022 #PowerList! "Hard work, honesty, ethical behaviour and treating others with empathy, respect, and dignity is the most important part of one’s place in life." bit.ly/3S9DS5B

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Khrystal K. Davis, JD@KhrystalKDavis·2 Eyl

At the @txrare #TXRareDisease week back in March, Chair @StephanieKlick shared in our meeting how #Telehealth helped her daughter. I’m grateful for her authenticity in sharing her daughter’s access to specialists during the pandemic. #txlege

Ashley Aaroe MD@AshleyAaroe

I joined @AANmember to speak up for #Telehealth and you easily can too (at the link below). Many patients with brain tumors otherwise (without Telemed) must travel long distances for subspecialty care. #AANadvocacy #btsm @NeuroOnc aan.quorum.us/campaign/41972/

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Khrystal K. Davis, JD@KhrystalKDavis·20 Ağu

@caitlinanichols @NeenaNizar @lukebrosen @kat_atchley @SLC6A1_Mom @OnceUponAGene @RarePOV @jerryw1976 @LostTexanInGA @Manuel94 🙌 This is desperately needed.

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Caitlin Nichols, PhD@caitlinanichols·20 Ağu

Calling #RareDisease patients and families — here's a chance to share your insurance denial stories with investigative journalists and hopefully generate some change 👇 @NeenaNizar @lukebrosen @kat_atchley @SLC6A1_Mom @OnceUponAGene @RarePOV @jerryw1976 @LostTexanInGA @Manuel94

Dr. Glaucomflecken@DGlaucomflecken

The good people at @propublica are putting together a project about health insurance denials. They are collecting stories. They came to the right corner of twitter for stories. You can tell yours at the link below. propublica.org/getinvolved/in…

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Khrystal K. Davis, JD@KhrystalKDavis·19 Ağu

@RichardEngel His contribution to the RETT & Rare Disease communities will live on. Gratitude.

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Richard Engel@RichardEngel·18 Ağu

Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease. To support the research: texaschildrens.site/duncan-nri/hen…

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Keşfet

@AlaskaAir @CMSGov @USCBO @Gil_Bashe @MatthewZachary @OffScripHealth @FINNPartners @txrare