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rarebydesign.bsky.social
Rare by Design
@rarebydesign.bsky.social
90 followers 15 following 88 posts
Grassroots nonprofit creating awareness of inclusion, representation and living life positively for #PWD and #RareDiseases along with their families. Founded by @Kegottsleben.bsky.social.
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Reposted by Rare by Design
kegottsleben.bsky.social
Amplifying the voices of people with rare diseases & #disabilities isn’t charity—it’s change. Every voice shared helps shape more inclusive schools, workplaces & public spaces. When we listen, we learn. When we include, we grow.

How can you help amplify others this week?

#DisabilityInclusion
Text on image says 'Amplify Voices!'. The image has multi colors of pink, purple & blue speech bubbles surrounding a silver microphone.
October 14, 2025 at 3:54 PM
rarebydesign.bsky.social
Representation matters!

When people with rare diseases and disabilities are seen and heard, communities grow stronger. Visibility changes perceptions—and opens doors to empathy, understanding and inclusion.

#RepresentationMatters #VisibilityCreatesChange #InclusionIsAlwaysIn
Text says ‘Visibility Creates Belonging!’ 3 females sitting in wheelchairs in the lobby of an event.
October 11, 2025 at 5:33 PM
rarebydesign.bsky.social
Grateful to Summer Raderschadt and KELOLAND News for shining a spotlight on our The Film Festival! Our mission is to see more authentic representation of people with disabilities and rare diseases in film and media every day.

www.keloland.com/news/local-n...
www.keloland.com
September 17, 2025 at 11:02 PM
rarebydesign.bsky.social
Did you see our Founder & Executive Director on Keloland Living today? She joined hosts Ashley Thompson and Mitchell Olson. Together they discussed The Film Festival — happening this week.

#InclusionIsAlwaysIn #RBDTheFilmFestival #TheFilmFestival www.keloland.com/keloland-liv...
www.keloland.com
September 17, 2025 at 12:49 AM
rarebydesign.bsky.social
Did you know our Founder and Executive Director walked in a New York Fashion Show back in 2016 with Runway of Dreams? That experience inspired her to bring a similar event to Sioux Falls, South Dakota.

She had never seen anyone with her rare disease walk a runway…
So she became the first.
September 15, 2025 at 6:44 PM
Reposted by Rare by Design
kegottsleben.bsky.social
Take 30 Seconds to Make a Difference!
Please write in by Sept. 20 to speak out against proposed changes that will impact hundreds of children across our state who receive specialized services.

At end of article, there are 2 ways shared on how to share comments.
www.dakotanewsnow.com/2025/09/09/s...
State proposed funding cuts to affect LifeScape services
A group of South Dakota families is raising the alarm to voice opinions on the care and treatment of children with disabilities and possible cuts to LifeScape, as proposed by the South Dakota Departme...
www.dakotanewsnow.com
September 10, 2025 at 2:37 PM
rarebydesign.bsky.social
⭐ Meet your emcee: Elizabeth Overmoe! ⭐

We’re delighted to welcome her back as this year’s host. Elizabeth has dedicated much of her life to advocating for individuals with disabilities, even garnering local and national recognition for her efforts. Plus, she’s great on the mic. 🎤 😉
Background is a gray film strip design. A female is wearing a green jacket with a blue poka dot blouse. She has blond hair and is smiling.
September 1, 2025 at 1:50 AM
Reposted by Rare by Design
kegottsleben.bsky.social
Turning 41 in a few months feels like both a milestone & a miracle. Living with a rare disease has taught me resilience, patience & how to celebrate the small victories most people never notice.
August 30, 2025 at 11:38 PM
rarebydesign.bsky.social
Meet Sara Tebben, one of our incredible committee members! Chances are you have already met, as Sara is heavily involved in the community, creating connections & spreading joy everywhere she goes! We’re so grateful to have her on our team. ☺️
#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
Dark teal background and at the top, there is a laurel with text that says ‘Rare by Design presents THE FILM FESTIVAL 2025.’ There is a white background with text says 'The Rare by Design Film Festival is a powerful reminder to me that every individual's uniqueness deserves to be seen, valued, and celebrated.' There is a small circle image of Sara next to text that says 'SARA TEBBEN Rare by Design Board Member'.
August 14, 2025 at 2:23 PM
Reposted by Rare by Design
emilyladau.bsky.social
Public media changed my life. As I grappled with insecurities throughout elementary school, I ended up becoming girl using a wheelchair on Sesame Street. There’s an undeniable power in both seeing yourself and being seen, and public media makes that possible. emilyladau.substack.com/p/a-viewer-l...
A Viewer Like Me: Finding Myself on Sesame Street
From watching Sesame Street to moving there (yes, really), authentic disability representation in public media shows us that we all belong.
emilyladau.substack.com
August 13, 2025 at 6:59 PM
rarebydesign.bsky.social
“We cannot expect a model designed for large populations to succeed in diseases with fewer than 500 patients.”

Joseph Muenzer and Paul Harmatz
www.biocentury.com/article/6566... #RareDisease #MPS #ML
FDA delays mean more deaths: Ultrarare diseases need a fit-for-purpose pathway
Process is slowing down progress. Science has evolved, and promising treatments are no longer the barrier to children with severe diseases living healthier...
www.biocentury.com
August 13, 2025 at 5:31 PM
rarebydesign.bsky.social
Presenting the official selections for 2025!

Congrats, filmmakers! Thanks for sharing your incredible stories & allowing us to showcase them on the big screen.

We’ll see you in September!

Grab tickets: 2025TheFilmFestival.eventbrite.com

#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
Dark teal background and at the top, there is a laurel with text that says ‘Offical Selection THE FILM FESTIVAL 2025.’ Text under laurel says 'LIFE AFTER DIAGNOSIS DAY I. DISABILITY II YOLK* *CONTAINS MATURE LANGUAGE BETWEEN TWO EARS ANAPHYLAXIS CONNECTIONS AGAINST THE CURRENT: KATE'S FIGHT FOR INCLUSION PRESSING BUTTONS GEMMA Visit EventBrite.com for ticket information.'
August 2, 2025 at 1:23 PM
Reposted by Rare by Design
kegottsleben.bsky.social
Thank you to Sioux Falls Simplified
for sharing about the ADA Sioux Falls’ upcoming festival and events honor #DisabilityPrideMonth! www.sfsimplified.com/how-sioux-fa...
How Sioux Falls is celebrating 35 years of disability rights
This Saturday marks the 35th anniversary of when the Americans with Disabilities Act was signed into law, prohibiting discrimination on the basis of disability
www.sfsimplified.com
July 24, 2025 at 3:26 PM
rarebydesign.bsky.social
Three is the magic number. Thank you so much for letting us screen your work at #TheFilmFestival, Daniel!

We’re excited for you to see what amazing films are in store this year. Tickets are on sale now! Get yours today. 🎟️ 2025TheFilmFestival.eventbrite.com

#RBDTheFilmFestival #InclusionIsAlwaysIn
Dark teal background with 5 white stars. Text says 'I am go grateful that this festival exists and serves such an important topic. It was an honor to have 1 film I directed, 1 film I co-produced and a third film I was an advisor on to be among the films screened in the first year. Although I could not attend, the remote engagement communication and and opportunities (such as sending in a video of the director's statement) were handled superbly." -Daniel DeFabio’ A laurel with text that says ‘Rare by Design presents THE FILM FESTIVAL 2025.’
July 22, 2025 at 4:40 PM
rarebydesign.bsky.social
We’re 2 months out from #TheFilmFestival, but tickets are on sale TODAY! Tap the link to get yours: 2025thefilmfestival.eventbrite.com

Join us on Sept. 18th for a rare opportunity to see even rarer voices on the big screen at the Sioux Falls State Theatre.

#RBDTheFilmFestival #InclusionIsAlwaysIn
Dark teal background with white laurel. Text says 'Rare by Design presents THE FILM FESTIVAL 2025 Tickets On Sale.’
July 18, 2025 at 3:18 PM
rarebydesign.bsky.social
1/4
For the past 2 yrs, we’ve celebrated Disability Empowerment Month with impactful outdoor billboard campaigns across Sioux Falls, SD, highlighting the power of disability visibility. This year, we’re proud to continue the tradition—with a fresh addition. Alongside our outdoor billboards, we’ve
July 14, 2025 at 9:17 PM
rarebydesign.bsky.social
Don’t miss your chance to see your film on the big screen at our beautiful downtown Sioux Falls State Theatre. 🎭

Tap the link: filmfreeway.com/TheFilmFesti...

#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn #FilmFestival
Side view of a large group of people watching a film on screen.
June 23, 2025 at 3:39 PM
Reposted by Rare by Design
andydrc.bsky.social
Airlines and Trump Administration Backpedal on Protections for Travelers With Wheelchairs www.nytimes.com/2025/06/20/t...
Airlines and Trump Administration Backpedal on Protections for Travelers With Wheelchairs
www.nytimes.com
June 21, 2025 at 8:43 AM
rarebydesign.bsky.social
Meet @kegottsleben.bsky.social, Founder & Executive Director of #TheFilmFestival! She works hard every day, turning lemons into lemonade and filling the cups of everyone around her. 🍋

Submissions are still open! You can submit them here: filmfreeway.com/TheFilmFesti...

#InclusionIsAlwaysIn #Films
Dark teal background and at the top, there is a laurel with text that says ‘Rare by Design presents THE FILM FESTIVAL 2025.’ There is a white background with text says 'What does the The Film Festival mean to you? "Growing up, I. rarely saw anyone who looked like me-people in wheelchairs, with disabilities, or living with rare diseases. And when those stories were portrayed, they were often told by actors without disabilities, like Dustin Hoffman in Rain Man. I hope The Film Festival can shine a light on the challenges faced by people with disabilities and serve as a platform for actors and filmmakers to share authentic stories that reflect our experiences.' There is a small circle image of Kendra next to text that says 'KENDRA GOTTSLEBEN Founder & Executive Director'.
June 19, 2025 at 10:20 PM
rarebydesign.bsky.social
Disability is a natural part of the human experience.

This graphic was created by Disabled by Society. Learn more on their website: disabledbysociety.com/about/

#InclusionIsAlwaysIn #InclusionMatters
Text says ''12 narratives we need to unlearn about Disability: Disabled By Society. There are 12 different colored squares with different type of figures in the squares. There is text under each square. Square 1 says, 'Disability is a tragedy'. Square 2 says, 'Disability is a tragedy'. Square 3 says, 'Disabled people are a burden'. Square 4 says, 'Inclusion is optional'. Square 5 says, 'Disabled lives need fixing'. Square 6 says, 'Access is a privilege'. Square 7 says, 'All disability is visible'. Square 8 says, 'Disability equals suffering'. Square 9 says, 'We 'overcome' disability'. Square 10 says, 'Independence means success'. 11 says, 'Adjustments are special treatment'. 12 says, 'Disability is not normal'.
June 17, 2025 at 3:55 PM
rarebydesign.bsky.social
Only 2 weeks left to send us your films!

Committee member Max Hofer is here to answer questions on how to submit.

Still have questions? Comment below & we’ll answer. Follow us for more!

See submission link: filmfreeway.com/TheFilmFesti...

#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
June 15, 2025 at 4:00 PM
rarebydesign.bsky.social
One way we’re honoring the #AmericansWithDisabilitiesAct, which was signed into law in July of 1990, is by having a sale in our Bonfire Store! Shop until July 2 for your 15% discount. At checkout, use code ADA15.

The mug in the photo is from our store! Shop here: www.bonfire.com/store/rare-b...
A hand holding a mug with text that says 'Inclusion Is Always In.' The person holding a mug is sitting in a lounger, and there is a dog in between the person's legs. Patio railing is in front of them with a swing set on the other side of patio railing.
June 14, 2025 at 1:31 AM
rarebydesign.bsky.social
Thanks for the kind words, Claudia! 😊

Remember that submissions are OPEN! Tap the link to submit. filmfreeway.com/TheFilmFesti...

#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
Dark teal background with 5 white stars. Text says 'Having, Rarely Have You Seen A Fox Like This, screen at Rare by Design was such a great opportunity. They made me feel so connected even though I wasn't able to attend in person. They communicated with me through every turn and made a concerted effort to make me feel special. I would highly recommend this festival." -Claudia Parker, Filmmaker.’ A laurel with text that says ‘Rare by Design presents THE FILM FESTIVAL 2025.’
June 10, 2025 at 3:15 PM
rarebydesign.bsky.social
In honor of the Americans with Disabilities Act, signed into law on July 26, 1990, we're having a sale in our Bonfire Store! Choose from all the different designs & swag until July 2 for your 15% discount. At checkout, use code ADA15 to apply your discount. Shop here: www.bonfire.com/store/rare-b...
The text says 'Swag Sale. 'In honor of the Americans with Disabilitiies Act, signed into law on July 26, 1990, we are having a sale in our Bonfire Store. At checkout, use code ADA15 for a discount. '15% off Shop Now'. Right of the text is a shirt image, and the text on the shirt says 'Inclusion Is Always In'.
June 5, 2025 at 8:07 PM
rarebydesign.bsky.social
Today’s the day! 🎉

Share this post and let your filmmaker friends know they have until the end of the month to submit. 🎞️

It’s easy. Click the link and share your film with us on FilmFreeway. Submit here: filmfreeway.com/TheFilmFesti... We can’t wait to view your film!

#InclusionIsAlwaysIn
Dark teal background with white laurel. Text says 'Rare by Design presents THE FILM FESTIVAL 2025 Submissions Now Open’
June 1, 2025 at 2:21 PM