Erin Moriarty Wade Andra Stratton Khrystal K. Davis, JD Rachelle Dixon @addiengeorge Cure Rare Disease Kevin Messacar MD PhD Sydney Stern, PhD, MS Catherine Stratton, MPH @rarespoonie Remember The Girls Danny Miller - MEPAN Foundation x.com/stacy_hurt/sta…

Truly, an HONOR! Thank you again The Pathologist

I wish you shared a picture, Dr. Aaroe :)

Warrior Rylee. #WarriorWednesday. Go, Rylee!

Our beloved son Henry passed away.  He had the softest blue eyes, an easy smile and a contagious giggle.  We always surrounded him with love and he returned it, and so much more.  Mary and Richard. texaschildrens.site/duncan-nri/hen…

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…

Calling #RareDisease patients and families — here's a chance to share your insurance denial stories with investigative journalists and hopefully generate some change 👇 Neena Nizar Luke Rosen Kathryn Atchley @SLC6A1_Mom Effie Parks Stephanie Fischer Jerry Williams 🇺🇸💙🏳️‍🌈 Nathan Peck M. LUBINUS

At the Texas Rare Alliance #TXRareDisease week back in March, Chair Stephanie Klick 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

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

Deep dive with Sam Harless State Rep District 126, Donna Howard, and Armando Walle on what to expect in the upcoming Legislative Session during THBI’s Annual Policy Summit. #thbisummit #txlege

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

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! Cheryl Pegus, MD, MPH Dr. John Whyte #healthequity #publichealth RSVP: eventbrite.com/e/improving-he…

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

Liftoff!

Looking forward to the Energy and Commerce Committee / Energy & Commerce Democrats markup of the #MVPAct tomorrow/today – thanks to Rep. Brett Guthrie Rep. Anna G. Eshoo Rep. Mariannette Miller-Meeks, M.D. Rep. Jake Auchincloss 🟧 John Joyce, M.D. Rep. Scott Peters for sponsoring this bill. Learn more about the bill here: gene-therapies.org/post/what-they…

Thanks to Matthew Zachary ✡️ 🇮🇱🟦, founder OffScrip Health, for his passion and partnership with FINN Partners around #ruralhealth. Matt was front and center in the conversation at "Heartbreak of the Heartland - Crisis in #RuralAmerica." #makeadifference

#ScienceSaturday

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

Not again…first flight on Alaska Airlines 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