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.

Family photo. Two boys with their mom and dad looking into the camera. One son has glasses and one doesn't. There is a decorated Christmas tree behind them.

Four young sisters holding hands as they walk towards the camera. They are walking on gravel surrounded by flowers and grass.

Siblings with their youngest sibling who has a rare disease. They all have their hands painted and in the air. All their shirt say "I love someone who is Rare." There is a cream colored back drop behind them.

Two year old boy wearing a camouflage jacket and smiling big. Orange flowers in the background of him.

Young girl standing with her hands on her walker looking at the camera. There is a white colored back drop behind her.

Mom and young daughter siting in a cart being pulled by bicycle. There are trees and a road behind them.

Family photo. One little girl and one little boy with their mom and dad outside with an Arc structure behind them.

The flower that blooms in adversity is the

most rare and beautiful of all!

- Mulan

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