RareKC is driving innovation in the diagnosis, care and treatment of rare diseases by connecting and inspiring our Kansas City community
Kansas City
Joined October 2015
- Tweets145
- Following58
- Followers144
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Rare KC retweeted
As patients and advocates, we must turn our pain and challenges into opportunities and change….
#sicklecellmidwest #FocusForward #BioNexusKC #RareKC
Rare KC retweeted
Great DEI & Health equity discussion at @ChildrensMercy Research Institute with Juny Simpson of @genentech - "it's a big problem, you've just got to jump in" "start, learn, iterate, scale" - with @RareKC @RARE_X_ @CHCofWyCo @BioNexusKC
Rare KC retweeted
#SaveTheDate 1/26/2023
This #Collaborate2Cure series will feature national & regional rare disease speakers. It is designed to stimulate collaboration to solve challenges facing patients, families, & caregivers impacted by rare diseases.
collaborate2cure.org
w/ @RareKC
Rare KC retweeted
Join us as we discuss disease management, mental health, advocacy, and so much more. Community Check In calls Saturdays at 1 PM. Email the Association for the details.
#sicklecellmidwest # communitycheckin #StrongerTogether
Rare KC retweeted
Wow! Powerful keynote talk at the @RareKC Symposium from Donna Pittman of @kmbc outlining her family's rare disease journey with #PompeDisease. Thank you for sharing! #showyourstripes
Rare KC retweeted
Great talks from @LindseyJarrett3, @mpolocamacho and Matthew Pjecha of the @PracBioethics on addressing ethical risks in emerging healthcare technologies with @RareKC
Rare KC retweeted
Great fireside chat at the @RareKC Symposium on advocationg for #RareDiseases, with incredible leaders from @BioKansas @Novartis @GlobalLiver and @EveryLifeOrg
Rare KC retweeted
Well done @RareKC. Encouraging to have drug companies, advocacy, doctors, researchers, patients and an insurance company, together, discussing improved healthcare for #raredisease! Imagine a world where insurance, researchers,and doctors were united for the good of patients!
Rare KC retweeted
It's Rare Disease Week. One KC man who lives with Sickle Cell Anemia makes it his life's work to find a cure. His inspiration is both heartbreaking and heartwarming. I hope you'll take a look at our story with Kevin Wake. @sicklecellmidewst @RareKC kmbc.com/article/kc-presiden…
Rare KC retweeted
@RareKC is hosting a 2-day symposium this Friday and Saturday! Check out the @ResearchCM Genomic Answers for Kids booth to learn more about research taking place to advance diagnoses and treatment for #rare diseases. #road2rare Symposium info: tinyurl.com/y8mbp884
Rare KC retweeted
(2/2) If you're living with Rare Disease you are NOT alone.
Your people are here for you. Interested? Register here 👇🏽 #RareDisease 🦓
eventbrite.com/e/road-to-equ…
Rare KC retweeted
We cannot wait to be a part of this amazing event in KC & are excited to have some members of our team as speakers. When it comes to rare disease collaboration, investments and cures, there are no boundaries to what
we can achieve together. rarekc.org/symposium/
#road2rare22
ALT Text at top: Road to Equity in Rare Disease. 2022 RareKC Symposium. February 25-26, 2022. Kansas City. The photo to the right is a picture of Kansas City's skyline. Below that are headshots of Tom Curran, Steve Leeder, Tomi Pastinen, and Jay Vivian.
Rare KC retweeted
Genomic Answers for Kids will have a booth at the upcoming @RareKC 2022 Symposium. Come visit with our study staff to learn more about rare disease research at Children’s Mercy! Symposium info: rarekc.org/symposium
Genomic Answers for Kids info: childrensmercy.org/genomican…
ALT Graphic says RareKC: Road to Equity in Rare Disease. www.rarekc.org/symposium. February 25-26, 2022. Day 1: Feb. 25 from 2-6pm at Polsinelli. Day 2: Feb. 26 from 9am-3:30pm at KU Edwards Campus.
Rare KC retweeted
We are proud to sponsor and host @RareKC's 2022 Symposium. The event will showcase speakers and panelists from patients, families, healthcare providers (HCPs) and representatives from national rare disease organizations.
Learn more: eventbrite.com/e/road-to-equ…
#RareKC2022
Rare KC retweeted
Celebrating @RoyBlunt NextGen Precision Health Research facility with @LtGovMikeKehoe & Kelly Ranallo @RareKC @MissouriCures Congratulations @MizzouResearch
Rare KC retweeted
The EveryLife Foundation in collaboration with dozens of rare disease patient advocacy community partners has created an #ICDCodeRoadmap
To view and share the ICD Code Roadmap and accompanying tools, visit ICDCodeRoadmap.org.
youtube.com/watch?v=zmijilJM…
Rare KC retweeted
Wonderful day yesterday @rarekc event. Thanks to everyone. In DC today for more shooting rarediseaseweek. Many thx to @globalgenes
