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About Us

Rare by Design is a nonprofit organization that works towards creating awareness, inclusion and representation for individuals with a rare disease and disability. We focus on living life positively to support our community and their families. Founded on the belief that everyone should celebrate the rare that makes us unique and extraordinary. Our events strive to foster community engagement for individuals with rare diseases and disabilities. Supporting Rare by Design means you are giving back to local and national nonprofits that assist research, human growth, self-advocacy and empowerment.

The flower that blooms in adversity is the

most rare and beautiful of all!

- Mulan

Our Mission

Our Mission

Celebrating the rare that makes us unique

and extraordinary.

Our Vision

Rare by Design strives to assist individuals with rare diseases and disabilities along with their families in creating awareness of inclusion, representation and living life positively.

Newly wed couple posing in wedding attire while siting in wheelchairs. Backdrop is green trees and grass.
Man standing behind female on a chaise lounge. Background is a lake, trees and grass.

Our Values

Positivity. Community. Empathy. Confidence.

Our Goals

  • To support local and national nonprofits that assist research, human growth, self-advocacy and empowerment
  • To foster community engagement for individuals with rare diseases and disabilities

  • To promote empathy and a sense of confidence that being unique is beautiful

  • To develop learning opportunities that assist individuals with rare diseases and disabilities with acceptance of owning their own uniqueness

  • To engage in discussions focused on inclusion, representation, diversity and quality of life

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