@RareByDesign

Creating awareness of inclusion, representation and living life positively for #PWD and #RareDiseases along with their families. Founded by @kegottsleben.

 South Dakota, USA
linktr.ee/RareByDesign
Joined March 2021
  • Tweets1.3K
  • Following118
  • Followers145
402Media
The Style Show: A Runway to Empower was such an honor to help plan + design. Rare by Design creates such a unique space to empower voices, bring awareness + encourage inclusivity within our community. Congratulations on an incredible 5th year!
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Happy 35th Anniversary to the Americans with Disabilities Act!
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Have you registered for our 4th annual Run, Walk & Roll event?! Join us on September 20, 2025, at Elmwood Park in Sioux Falls, SD. This is a great local 1-mile, 5k and 10k on the bike trail. Learn more here: runsignup.com/Race/SD/SiouxF… #SDCenterForDisabilities #HealthAndWellness
Blue circle with white text that says 'Register Now'. Under blue circle, text says 'September 20, 2025 Elmwood Park, Sioux Falls, SD.' A line dividing graphic. Logo text says 'Center for Disabilities 2025 Run, Walk & Roll' with black people figures running, walking and rolling in a wheelchair.

ALT Blue circle with white text that says 'Register Now'. Under blue circle, text says 'September 20, 2025 Elmwood Park, Sioux Falls, SD.' A line dividing graphic. Logo text says 'Center for Disabilities 2025 Run, Walk & Roll' with black people figures running, walking and rolling in a wheelchair.

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.@EveryLifeOrg Asks Advocates to Urge your Members of Congress to protect #RareDisease experts, funding, and stability of our nation’s biomedical research and public health agencies. It takes no time at all to do this. everylifefoundation.quorum.u…
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RareByDesign retweeted
Neena Nizar@NeenaNizar9 Feb 2025
Rare disease research is already underfunded. Cutting indirect costs only worsens the situation, jeopardizing the very science that leads to breakthroughs. How can we expect innovation when the basic support for it is stripped away? @doge #SaveScience #RareDiseaseTruth
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This is my #ZebraTail in honor of spreading awareness for #RareDiseaseDay happening at the end of the month. Share your Zebra Tail & tag @globalgenes! Join the fun. #CareAboutRare #Advocacy #RareDisease #GlobalGenes #ShareYourStory @RareDayUS instagram.com/reel/DFp7syDsC…

kegottsleben (@kegottsleben) • Instagram reel

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🎉 We’re celebrating 75 years of progress! #MDA’s new PSA, Legacy. Impact. Momentum., honors the families, researchers, clinicians, advocates, volunteers and partners who’ve made breakthroughs possible. 💙💛 Watch it now: mda.org/press-releases/2025/… MDA75.org #MDA75
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“Why it matters: People with disabilities face obstacles in landing jobs, but their employment rates soared in the wake of the pandemic as remote work became more common.” axios.com/2025/01/24/dei-ord…

Trump's DEI attack may halt progress for disabled workers

The president reversed a 2021 order aimed at making the federal workplace more accessible.

axios.com
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What do you get when you combine #PictureDay for our Infant-Toddler Program with #OrientationAndMobility? This moment of Shirley guiding Ella, who using her #WhiteCane, over to her chair for her photo! ✨📸
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“People with disabilities are the largest minority in the world, and we are the most underrepresented in entertainment.” -Maysoon Zayid #Disability #Entertainment #WednesdayWisdom
An illustration of diverse women overlaid with the Maysoon Zayid quote from the post. The ADA National Network blue doors logo is in the bottom right corner.

ALT An illustration of diverse women overlaid with the Maysoon Zayid quote from the post. The ADA National Network blue doors logo is in the bottom right corner.

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This past week I spent an incredible time at @GlobalGenes’ #WeekInRARE! It was all that I had hoped for and more. I had the pleasure to reconnect with familiar faces, meet new rare #ChangeMakers and lend my voice to the global space of #rare. Read more: facebook.com/KendraGottslebe…

Kendra Gottsleben

This past week I spent an incredible time at Global Genes’ Week in RARE in Kansas City, MO! It was all that I had hoped for and more. I had the pleasure to reconnect with familiar faces, meet new...

facebook.com
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Start your bidding via @RareByDesign's @32auctions link today!
RareByDesign@RareByDesign17 Sep 2024
We're excited to share that our #SilentAuction is LIVE! Start #bidding on several unique prizes! See link here: 32auctions.com/RBDTheFilmFes… to view packages. Bidding ends Sept. 19th at 8:30 pm What's fun about our auction is that anyone can bid even if you aren’t able to attend.
Dark teal background with white laurel. Text says 'Rare by Design presents THE FILM FESTIVAL Auction is Live! Make your bid today!' A white outline graphic of a cell phone with text in the cell phone that says '$ Bid'.

ALT Dark teal background with white laurel. Text says 'Rare by Design presents THE FILM FESTIVAL Auction is Live! Make your bid today!' A white outline graphic of a cell phone with text in the cell phone that says '$ Bid'.

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Great article by Richie Kahn of the Canary Advisors®! #ClinicalTrials #PWDs #Disability clinicalleader.com/doc/why-a…

Why Are We Still Excluding Persons With Disabilities (PWDs) In Clinical Trials?

Canary Advisors Cofounder and COO Richie Kahn details the National Council on Disabilitys call for the inclusion of people with disabilities in clinical trials.

clinicalleader.com
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Will you be joining @RareByDesign at our #TheFilmFestival? It's happening this week. Grab your tickets here: tinyurl.com/bdhpuet7
RareByDesign@RareByDesign15 Sep 2024
2024 FILM FESTIVAL SELECTION SPOTLIGHT! Burden | Directed by Vedran Jurić (Croatia) Domagoj (19), on the difficult day they lose their mother, leaves his sister Stela (9) alone at home to go out with his friends. This film contains mature content.
Man with hands sitting on a fence together. He is outside on the street and it is dark out in the evening time. There is a street lamp over him so he is lit.

ALT Man with hands sitting on a fence together. He is outside on the street and it is dark out in the evening time. There is a street lamp over him so he is lit.

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Our history so far... Bring on #Paris2024!
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Let's take a tour of the Paralympic Village! 🏘️🌳 Introducing your tour guide, the #Paralympics Phryge. @Paris2024

Paris 2024 Paralympic Village

Let's take a tour of the Paralympic Village with the Paralympic Phryge.

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Four years ago today, I had #OpenHeart surgery at @mhfvpediatrics & knew there wasn’t a guarantee when one heads into an operating room that all would be successful. I knew all I could do was trust in God’s plan & believe that my medical team was as... instagram.com/p/C-nHXUIugNq/

kegottsleben (@kegottsleben) • Instagram reel

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Join us for our upcoming #training entitled "From Law to Learner: Developing Compliant and Student-Centered #IEPs." Guest speaker Dr. Mitchell Yell will be with us. Dates: Sept 10, Oct 15, Nov 12, Dec 4 Time: 4 - 7 PM CST Register today! #Disability eventbrite.com/e/from-law-to…

From Law to Learner: Developing Compliant and Student-Centered IEPs

Participants will look deeper at the essential components of an IEP.

eventbrite.com
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TICKETS NOW LIVE! Join @RareByDesign for our inaugural #TheFilmFestival this September! #RareByDesign #InclusionIsAlwaysIn #InclusionMatters
RareByDesign@RareByDesign17 Jul 2024
TICKETS NOW LIVE! We're excited to share that tickets for #TheFilmFestival at the Sioux Falls State Theatre are now available to buy! Go online now & grab your tickets at tinyurl.com/bdhpuet7 Join us for an evening you don't want to miss!#InclusionIsAlwaysIn #RareByDesign
Dark teal background with white laurel. Text says 'Rare by Design presents THE FILM FESTIVAL Tickets are Live!' Outline graphic of two movie tickets next to each other.

ALT Dark teal background with white laurel. Text says 'Rare by Design presents THE FILM FESTIVAL Tickets are Live!' Outline graphic of two movie tickets next to each other.

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75/100 days done! Did you know Great Bear Recreation Park has multiple paths to log your miles, including an ADA-rated hard-surfaced trail? Check out some other spots to finish out the Mayor’s 100 Miles, 100 Days fitness challenge. #100Miles100DaysSF siouxfalls.gov/government/ma…
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