RareKC is driving innovation in the diagnosis, care and treatment of rare diseases by connecting and inspiring our Kansas City community
Joined October 2015
- Tweets 145
- Following 60
- Followers 146
- Likes 88
43 Photos and videos
Rare KC retweeted
21 Oct 2022
As patients and advocates, we must turn our pain and challenges into opportunities and change….
#sicklecellmidwest #FocusForward #BioNexusKC #RareKC
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Rare KC retweeted
27 Oct 2022
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
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Rare KC retweeted
16 Nov 2022
#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
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We had a great time at @BioNexusKC's annual event - Focus Forward. The night brought together over 500 leaders to celebrate #healthcare #innovation in #kansascity.
Thanks for having us, @BioNexusKC. We are grateful for the opportunity to sponsor such an impactful night!
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Rare Families: Check out these great resources from @KansasFT including healthy parent-teacher relationships for early learning success, self-advocacy tips, and more! myemail.constantcontact.com/…
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We just registered for #RareAcrossAmerica2022 🎉
Join us in advocating on behalf of the #KansasCity #rare community 📢
3 Jun 2022
Attention rare disease advocates, #RareAcrossAmerica2022 registration is open!
- Make an impact in your district
- Share your rare disease story
- Meet other rare disease advocates
When? August 8th to August 19th, 2022
To learn more and register visit rareacrossamerica.org
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TOMORROW: Our friends at The Rare Disease Diversity Coalition are hosting The Global Impact of Sickle-Cell Disease: Who is at Risk? How is it Managed? What’s Next?
Taking place via YouTube from 1pm-2pm EST.youtube.com/watch?v=8E4DEIPR…
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We are proud to share a report from our friends @RARE_X_ entitled, "The Power of Being Counted."
This report discovered that there are as many as 10,867 rare diseases, rather than the oft-reported previous estimate of 5,000-8,000. #raredisease #research rare-x.org/case
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Calling all #rare Artists 🎨🧑🎨
Our friends @EveryLifeOrg are now accepting submissions for the Rare Artist Annual Contest until July 13th! To learn more or to submit your artwork visit RareArtist.org
Lysosomal Storage Disorder (LSD) Community 🔊
We invite you to join us and @KUmedcenter
for our Rare Disease Educational Meeting: Building Patient Education & Advocacy Pathways in LSDs on July 30th. Register for this half-day, virtual event: eventbrite.com/e/rare-diseas…
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Rare KC retweeted
20 May 2022
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
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According to @ojrarediseases, 82% of those with a rare disease reported having anxiety and stress on a daily basis.
@KansasFT, @kulifespan & LEND at @KUMedCenter are offering a free film screening on May 25th, "Just Like You Anxiety & Depression." conta.cc/38UP8ka
We are SO inspired by Jörg Richter who is biking from coast-to-coast to raise money and awareness for
@CareforRareUS for the 8th time!!🚴😍
To learn more about his journey and the mission behind
@CareforRareUS visit: krdo.com/news/2022/05/03/man…
Join a community listening session to share your experiences with #rare and complex health conditions and inform research at @ResearchCM. 🗣️✍️
Learn more at: redcap.link/ListeningSession….
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Join us (virtually) on Capitol Hill for the May 2022 Congressional Caucus Briefing on May 25th at 2 pm EST to discuss community priorities for the Prescription Drug User Fee Act (PDUFA) Reauthorization.🗣⚖️
To register – click the link below.
everylifefoundation.salsalab…
RareKC Community❗️
Register for a family account through @SeeInMe_Inc using the code "Individual100" to get a FREE Instant Connector. 💙
seeinme.com/#home
Visit our friends at @_AbilityKC on April 27th for their Spring Wheelchair Wash! 🧼 Stop by and let their volunteer washers and the fine folks from @GoNumotion tighten and adjust your wheelchair. To register: WWW.ABILITYKC.ORG/WHEELCHAIR…
Join the @RareAdvocates for the March Monthly Webinar tomorrow @ 9 am PT/12 pm ET. ⚖️
Once a month RDLA convenes to discuss legislation and developments that affect the rare disease community.
To register and see the full agenda visit: bit.ly/36kUt3a
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The #RAREis Scholarship Application is now open! 📣
@HorizonNews and @EveryLifeOrg will be granting 53 young adults with rare diseases a one-time scholarship of $5,000 to pursue their dreams through education. Apply below ⬇️
everylifefoundation.org/rare…
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