The #RAREis Scholarship Application is now open! 📣 Horizon and EveryLife Foundation 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-scholarsh…

Join the RDLA 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

Visit our friends at Ability KC on April 27th for their Spring Wheelchair Wash! 🧼 Stop by and let their volunteer washers and the fine folks from Numotion tighten and adjust your wheelchair. To register: ABILITYKC.ORG/WHEELCHAIR-WAS…

RareKC Community❗️ Register for a family account through SeeInMe using the code "Individual100" to get a FREE Instant Connector. 💙 seeinme.com/#home

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.salsalabs.org/May2022CaucusB…

Join a community listening session to share your experiences with #rare and complex health conditions and inform research at Children's Mercy Research Institute. 🗣️✍️ Learn more at: redcap.link/ListeningSessi….

We are SO inspired by Jörg Richter who is biking from coast-to-coast to raise money and awareness for Care-for-Rare America for the 8th time!!🚴😍 To learn more about his journey and the mission behind Care-for-Rare America visit: krdo.com/news/2022/05/0…

According to OrphanetJournal at BMC, 82% of those with a rare disease reported having anxiety and stress on a daily basis. FamiliesTogether Inc, Life Span Institute & LEND at KU Medical Center are offering a free film screening on May 25th, "Just Like You Anxiety & Depression." conta.cc/38UP8ka

RareKC is proud to support KC Rising 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. 💙

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

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-disease…

Calling all #rare Artists 🎨🧑‍🎨 Our friends EveryLife Foundation are now accepting submissions for the Rare Artist Annual Contest until July 13th! To learn more or to submit your artwork visit RareArtist.org

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

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=8E4DEI…

We just registered for #RareAcrossAmerica2022 🎉 Join us in advocating on behalf of the #KansasCity #rare community 📢

Rare Families: Check out these great resources from FamiliesTogether Inc including healthy parent-teacher relationships for early learning success, self-advocacy tips, and more! myemail.constantcontact.com/Parent-Teacher…

As patients and advocates, we must turn our pain and challenges into opportunities and change…. #sicklecellmidwest #FocusForward #BioNexusKC #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!

Great DEI & Health equity discussion at Children's Mercy Research Institute with Juny Simpson of Genentech - "it's a big problem, you've just got to jump in" "start, learn, iterate, scale" - with Rare KC RARE-X CHC of Wyandotte County 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. collaborate2cure.org w/ Rare KC