Rare KC

RareKC is driving innovation in the diagnosis, care and treatment of rare diseases by connecting and inspiring our Kansas City community

[UEO Sickle Cell @UEOSickleCell]

As patients and advocates, we must turn our pain and challenges into opportunities and change….

#sicklecellmidwest #FocusForward #BioNexusKC #RareKC

[Dennis Ridenour @DennisRidenour]

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

[BioNexusKC @BioNexusKC]

#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.

https://t.co/IOaY2RwCeo

w/ @RareKC

[Rare KC @RareKC]

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!

[Rare KC @RareKC]

Rare Families: Check out these great resources from @KansasFT including healthy parent-teacher relationships for early learning success, self-advocacy tips, and more! https://t.co/GUVvAqDgmy

[Rare KC @RareKC]

We just registered for #RareAcrossAmerica2022 🎉

Join us in advocating on behalf of the #KansasCity #rare community 📢

[RDLA @RareAdvocates]

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 https://t.co/XmNFgjyReK

[Rare KC @RareKC]

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.https://t.co/W2ZJWxcOtG

[Rare KC @RareKC]

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 https://t.co/JwniqWc3sR

[Rare KC @RareKC]

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 https://t.co/8LtwHxZ4Vr

[Rare KC @RareKC]

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: https://t.co/IP15nz9f7D

[UEO Sickle Cell @UEOSickleCell]

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 @RareKC]

RareKC is proud to support @KCRising and their vision of regional prosperity and opportunity for all in #KC.

We were honored to represent the #RARE community in #KC at the #HorizonKC 2022 event today. 💙

[Rare KC @RareKC]

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." https://t.co/IAH8c58nCm

[Rare KC @RareKC]

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: https://t.co/4LY7gPJ6bN

[Rare KC @RareKC]

Join a community listening session to share your experiences with #rare and complex health conditions and inform research at @ResearchCM. 🗣️✍️
Learn more at: https://t.co/FFxivFY2s8.

[Rare KC @RareKC]

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.
https://t.co/9jcCmZRjXz

[Rare KC @RareKC]

RareKC Community❗️
Register for a family account through @SeeInMe_Inc using the code "Individual100" to get a FREE Instant Connector. 💙
https://t.co/HK09qhMaGk

[Rare KC @RareKC]

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: https://t.co/OsM0YsGjdQ

[Rare KC @RareKC]

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: https://t.co/5NfRfaAgjF

[Rare KC @RareKC]

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 ⬇️
https://t.co/zRKSBUdZ99