@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!
1
1
34
Happy 35th Anniversary to the Americans with Disabilities Act!
3
1
10
688
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
Side view of a large group of people watching a film on screen.

ALT Side view of a large group of people watching a film on screen.

2
32
Thanks for the kind words, Claudia! 📷 Remember that submissions are OPEN! Tap the link to submit. filmfreeway.com/TheFilmFesti… #TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn #Disability #RareDisease #Films
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.’

ALT 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.’

1
1
34
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.

2
2
108
We are so grateful for @EventCompanySD!
The Event Company@EventCompanySD7 May 2025
The Style Show: A Runway to Empower 2025. What an incredible night of celebrating the rare that makes us all beautiful! Client: @rarebydesign Venue: Hilton Garden Inn DT Sioux Falls Photos: @pinstudiossf #MidwestEventPlanner #EventDesign #CharityEvent #FashionShow
22
We are so grateful for your support and assistance with this event each year.
The Event Company@EventCompanySD7 May 2025
The Style Show: A Runway to Empower 2025. What an incredible night of celebrating the rare that makes us all beautiful! Client: @rarebydesign Venue: Hilton Garden Inn DT Sioux Falls Photos: @pinstudiossf #MidwestEventPlanner #EventDesign #CharityEvent #FashionShow
1
17
1/2 Did you know that it is estimated that 1 in 10 people (30 million) in the United States have a rare disease? This year’s #RareDiseaseDay is more critical than ever to increasing awareness & research. youtu.be/yH5XFg-U3qk?si=p4b-…

1 in 10 Have a Rare Disease

Did you know that it is estimated that 1 in 10 people (30 million) ...

youtube.com
1
54
2/2 Advancing lifesaving treatments & initiatives is vital! Average time to diagnose rare diseases is 4.8yrs & only about 5% of #RareDiseases have approved treatments. We'd love for you to join in recognizing #RareDiseaseDay on Feb. 28 by wearing stripes or rare disease colors.
1
17
[Video Description] 7 rare disease advocates talking about them being 1 in 10 and sharing the name of their rare disease.
9
.@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…
1
2
59
1/3 Meet Cara McGary! You will see her as one of our models at #TheStyleShow on May 3! Cara is from Sioux Falls, South Dakota, and is currently a freshman at South Dakota State University (SDSU) studying nursing. She is also a cheerleader on the SDSU Cheerleading team.
Image of Cara with a lake and sunset behind her. She has long light brown hair and a green spaghetti strap dress on. Text to the left of her image that says 'Cara McGary’ in hot pink font. 'MODEL FEATURE' in teal font with a black strip of color behind it. The bottom left is the 'THE Style SHOW A RUNWAY TO EMPOWER logo'.

ALT Image of Cara with a lake and sunset behind her. She has long light brown hair and a green spaghetti strap dress on. Text to the left of her image that says 'Cara McGary’ in hot pink font. 'MODEL FEATURE' in teal font with a black strip of color behind it. The bottom left is the 'THE Style SHOW A RUNWAY TO EMPOWER logo'.

1
1
97
2/3 Cara was born deaf. She has cochlear implants in both ears but she prefers her right one. Cara wants to see you cheering loudly for all the models on Sat., May 3! Let's see if you can accomplish this for her during the runway show by spending the evening with us.
1
33
3/3 Grab your early bird pricing ticket(s) and other fun add-on items at thestyleshow.org. #InclusionIsAlwaysIn #RepresentationMatters #FashionForAll
17
We are excited to announce that tickets for #TheStyleShow at the Catlin (formerly known as Hilton Garden Inn DTSF) are now available for purchase. This year we have early-bird pricing. Prices will last until March 15! Snag your ticket(s) at thestyleshow.org
Black boarder at the top with light blue text that says 'Early Bird Pricing Starts Now!' Under text and boarder is a peach color background with a decorative design on the background. Text over background says 'GA $95' in black font with a pink X over it. Text that says ‘$85 limited time only’ in black and pink font. Text that says ‘VIP $120’ in black font with a pink X over it. Text that says ‘$110 limited time only’ in black and pink font. Bottom right corner logo of text that says ‘The Style Show A Runway to Empower’ with a pink rectangle around it.

ALT Black boarder at the top with light blue text that says 'Early Bird Pricing Starts Now!' Under text and boarder is a peach color background with a decorative design on the background. Text over background says 'GA $95' in black font with a pink X over it. Text that says ‘$85 limited time only’ in black and pink font. Text that says ‘VIP $120’ in black font with a pink X over it. Text that says ‘$110 limited time only’ in black and pink font. Bottom right corner logo of text that says ‘The Style Show A Runway to Empower’ with a pink rectangle around it.

31
Today we shot video footage for our Tradition of Caring commercial with @keloland! We had a wonderful time with the #Keloland crew as we filmed. Our team is incredibly excited to see the final product. #InclusionIsAlwaysIn #RepresentationMatters instagram.com/reel/DF886D4Mp…

Rare by Design (@rarebydesign) • Instagram reel

instagram.com
1
18
[Video Description] Photos of people with different disabilities in a TV studio in front of a green screen and sitting in studio.
14
#ModelMonday Let's meet our next model who will join us on our #TheStyleShow runway this May 3! Derek Smith lives in Sioux Falls, SD, and has a dog, Jaxon. He works at @joingreatlife Fitness and Performance Center and loves to... facebook.com/photo/?fbid=643… #InclusionIsAlwaysIn
Image of Derek with a white backdrop behind him. He has short black hair, a blue long sleeve button-down shirt with black pants and sneakers. Text to the left of his image that says 'Derek Smith' in hot pink font. 'MODEL FEATURE' in teal font with a black strip of color behind it. The bottom left is the 'THE Style SHOW A RUNWAY TO EMPOWER logo'.

ALT Image of Derek with a white backdrop behind him. He has short black hair, a blue long sleeve button-down shirt with black pants and sneakers. Text to the left of his image that says 'Derek Smith' in hot pink font. 'MODEL FEATURE' in teal font with a black strip of color behind it. The bottom left is the 'THE Style SHOW A RUNWAY TO EMPOWER logo'.

36
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
2
4
217
#FashionFriday Let’s give it up for Terra Shepherd Boutique & Apothecary! Not only is our team excited to have them back in lineup for #TheStyleShow, but so are our models! Trendy & adaptable clothing is what we like to see. Can’t wait to have our models show off their clothing.
Background is a light tan with a black and pink border on top and bottom. Text at the top in black font and pink outline rectangle boarder around it says 'Feature Fashion'. Under that is a logo of text that says ‘Terra Shepherd Boutique & Apothecary’. The bottom right is a logo that says 'The Style Show A Runway to Empower'. The logo has a pink outline rectangle boarder around it.

ALT Background is a light tan with a black and pink border on top and bottom. Text at the top in black font and pink outline rectangle boarder around it says 'Feature Fashion'. Under that is a logo of text that says ‘Terra Shepherd Boutique & Apothecary’. The bottom right is a logo that says 'The Style Show A Runway to Empower'. The logo has a pink outline rectangle boarder around it.

1
1
49
Load more